Wow, what an outpouring of love I have received since going "public." I had no idea what to expect and was so nervous to finally press the publish button. All of your words will help me keep my spirits up through the next stages of treatment. It also got me jazzed to post this follow up I had been ruminating over.
Probably since she could speak, my little sister would call me controlling. She wasn't wrong. I can admit that I like to feel in control. Cancer takes that away from you. Research, planning, and a few other tricks have helped me to feel like less of a helpless victim of genetics. Though I already mentioned this is still a food blog and NOT a cancer blog, I wanted to create one comprehensive useful document for others, having spent too many hours scouring countless blogs, speed reading post after post to pull out the practical pieces that would be relevant or useful for me. I want to share my collection of "best practices" but also first acknowledge that some things just come down to luck (i.e. early detection, having the best family ever, a loving partner, a ton of friends close by, and some willing to travel across the country to see me for one night).
1) Genetic Testing/Early Detection: Knowing for over a year before the actual diagnosis that I had a highly likely chance of developing cancer due to the BRCA1 mutation helped me prepare mentally and also get on a monitoring program which allowed for the early detection of my cancer. If you have a family history of breast cancer, speak to a genetic counselor first, and then think about getting testing. If knowledge is power for you, then do it.
2) $$$- Aflac/Grants/Charity Care: Once I found out about my BRCA gene, I purchased a Cancer Care plan with Aflac which offers an initial $4.000 pay out upon most cancer diagnoses that comes in real handy as expenses pile up as well as additional payouts for other costs incurred related to your treatment. The yearly cost to me was under $400, but you get $75 back a year for having a mammogram or other diagnostic procedure. For less than a dollar a day, this was absolutely a worthwhile investment. I made a cheat sheet for the pay out benefits for anyone submitting claims. For underinsured individuals, there are many grants out there (I have gotten generous grants from Team Maggie and Project Yechi) and most hospitals have Charity Care program that can cover all or a portion of your medical bills.
3) Strength through open communication and being fair to yourself: Maybe this isn't surprising, but when you google "how to be supportive to your loved ones when you have cancer" not much comes up. This is hard and confusing for the people who love you. I realized that the way to get the support I needed from my loved ones was to lead the conversations. I didn't want to hear "things happen for a reason" so I told people that. I also told my friends I wanted honesty, jokes, and nights out as much as possible while I was physically able. BCCed monthly group emails became my source for honest updates, the first one even had a FAQ section! Snapchatting milestones and appointments with clever emojis also has helped me find humor on bad days while keeping my friends updated. I allow myself to feel sadness and loss at times, but also practice good self care to keep my spirits up which usually (and obviously) involves good food.
4) Connections and Smart Research: Speaking with other women who had gone through very similar situations helped a lot to prepare me mentally. Reading cancer blogs helped too, though that can get overwhelming and make you think the worst; everyone's experience is different which is crucial to keep in mind while reading and doing research. The people on chatboard are probably the ones who are having the hardest times, right? I was able to get a scholarship to attend a FORCE conference while it was in Philly, which features educational seminars on all aspects of hereditary cancer
5) ASMR Videos: I'm not a meditator, though it has been suggested lately by a lot of people. What I am into is ASMR videos on Youtube. I'll leave it to my favorite ASMRtist to explain, but generally the videos are about creating sounds that are soothing and help you fall asleep. Many people find this creepy, but for me and hundreds of thousands of subscribers who get lulled to bed every night without the need of a prescription drug, it is a beautiful thing- and free.
6) Great Medical Team, HIPAA release, understanding your insurance, and organized shareable documents: My doctors, nurses, and social workers at Jefferson Hospital have been amazing. The appointments and phone calls can be overwhelming for one person though. If you are lucky enough to have people in your life who can be a part of your medical support team, get permission for them to speak on your behalf. I signed HIPAA release forms so that my parents could help field many of those calls during the day while I was working at my new job. Make sure you also check in advance which procedures require scripts and/or referrals from your primary care doctor; a good social worker can help with that. I also created shared google drive folders with a page for medical contact info, appointment dates, insurance and billing info, checklist for supplies needed, and a list of grants applied for with uploaded supporting documents.
7) The "Registry": I think of myself as a helper. Being useful to others is one of my most important values. I realize that many of the people close to me feel the same and that the most common response after sharing the diagnosis was to ask how they could help. By putting together a spreadsheet of the items I felt I needed for the surgery and treatment, from small to bigger items, helped my network of loved ones feel connected to me in a meaningful way, besides the obvious result of helping me save time and money. Receiving packages is always something that can cheer you, even if it's a pillow to cushion your chest from the seatbelt on your way home from the hospital. My sister helped facilitate so there was no duplication. A copy of that spreadsheet can be found here.
8) Party: Two nights before my surgery my friend hosted an intimate gathering for my intimate parts. Yes, there was a boob cake and boob cookies. I was able to speak openly about my fears, get lots of hard hugs while I still could, and was able to also distract myself for a night.
9) Photoshoot: With all its flaws, the surgery meant I was about to undergo a permanent change to the body I was used to and fond of. Doing a photoshoot with Chris String was a fear conquering and fun activity and allows me now to always have a beautifully lit collection of images of that former physical version of myself.
10) So Fresh and So Clean-Waxing/Nails/Scrub/Teeth/House: If you are having the surgery, you won't be able to lift your arms for a while and might as well get a pre surgery armpit wax, throw in a pedicure and cut your nails short while you are at it. For new customers, the first service is free at the European Wax Center, just don't forget to tip. Since post surgery showers will be a little precarious and delicate, consider getting a full body scrub. I did a day trip to Chung Dam Spa in North Philly for a day of relaxation with a vigorous scrub thrown in the week before my surgery. Schedule a teeth cleaning as you are usually instructed not to do that while doing chemo. Clean your house and do laundry as close do your surgery/chemo date. Cleaning for a Reason offers free cleaning services once you are in treatment.
11) Hair Looking normal can help you feel normal. I am very attached to my long hair and to my eyebrows. The type of chemotherapy I will be receiving almost always results in hair loss. Head shaving can be empowering for some, but I want to put up a fight. Prior to the chemo start date, I had my eyebrows microbladed at the beautiful Lacquer Lounge in Old City. Erica, the microblader, and Lisa, the salon owner, treated me so kindly. This newly popular technique uses a blade and customized ink to make semi permanent hair like strokes to create, shape, or thicken eyebrows. The process was not very painful and I am so glad I did it. I will have to wait longer than the usual 4-6 weeks for the touch up because tattooing and chemo are not a good combo. If you do lose your hair, there are the obvious sources for hair donation, however if you decide to not do a drastic haircut resulting in a neat ponytail and instead, you lose your hair gradually, Clean Wave is a program that accepts all hair donations and uses it to clean up oil spills.
12) Nutrition and Mushrooms: I purchased a nutribullet and try to start my mornings with smoothies as often as possible. For other meals, I let myself have plenty of carbs and cheese. Four Sigmatic sends free kits of mushroom extracts with cancer fighting properties to people who have received a diagnosis. Mushrooms can have energizing and immune boosting properties. Save the reishi extract until you are finished with chemotherapy as it can diminish the effectiveness of the treatment. Of course, check with your oncologist first.
13) Unite for HER Wellness Day program: after attending a one day session on health, you are entitled to a years worth of free services include massage, acupuncture, gym membership, and CSA share. Look Good, Feel Better is another program offered at hospitals regularly that includes a fairly basic makeup lesson, but you walk away with a big bag of name brand cosmetics.
14) Free Trips: There are organizations out there that fund free trips for cancer survivors. You better believe I plan on taking advantage of that- total recovery goal/something to look forward to. (Added 9/2017) I was recently able to spend the week white water kayaking in Wyoming through First Descents; it was fun, challenging, and very meaningful.
Just to keep it real honest with ya, this list took an insane amount of research time so I do hope it can be a help to others. So "good luck" "stay strong" "we got this" and all that other cliche stuff.
Free Stuff Cheat Sheet
Team Maggie: fertility preservation grant
Project Yechi : rent assistant grants (if you are Jewish)
European Wax Center : one free service for new clients
Cleaning for a Reason: free cleaning services once you are in treatment
Four Sigmatic: free kits of mushroom extracts
Unite for HER Wellness Day program