Sunday, February 16, 2014

Things I Wish I Knew Then

When you are diagnosed with any form of cancer it takes your breath away. You honestly feel like the rug was pulled out from under you and your life is over. At least that is how I felt. One of the first things that I did, besides make an appointment with my surgeon to go over my options, was search online. Big mistake. First and foremost there are SO many horror stories about treatments and procedures. I looked at photos of other women who have had double mastectomies and it was absolutely traumatizing. Through my journey I have picked up tips and tricks, different techniques and things that I did and used that either worked great, didn't work at all and I'm going to share it. They are all things that I wish I knew from the get-go and would have saved me a ton of time, money and stress:

1. STAY ORGANIZED:  You don't realize it but the hospital will be your second home....maybe even your first home because you are there so much.  Although, depending on what hospital you are going to they offer a log of your future appointments online, between meeting with your plastic surgeon, regular surgeon, pre-op appointments, post-op appointments and everything in between you will not know if you are coming and going.  Buy a 12 month calendar and keep it with you.  You want to be adamant about writing down EVERY appointment and time so you're not missing a beat.  Also buy an expandable file to store all of your medical bills, paperwork given once you go home from surgery, prescription information, etc....  I mostly stayed organized, just filing everything has been a pain.

I got my expandable file sent from the American Cancer Society and it is great.

twelve month calendar, 12 month calendar, chemo, breast cancer, treatment, staying organized, expanding file, expandable file, organization, personal health manager, american cancer society

twelve month calendar, 12 month calendar, chemo, breast cancer, treatment, staying organized, expanding file, expandable file, organization, personal health manager, american cancer society


twelve month calendar, 12 month calendar, chemo, breast cancer, treatment, staying organized, expanding file, expandable file, organization, personal health manager, american cancer society

twelve month calendar, 12 month calendar, chemo, breast cancer, treatment, staying organized, expanding file, expandable file, organization, personal health manager, american cancer society

















2. GET ALL OF YOUR DUCKS IN A ROW BEFORE SURGERY:  Even though you have a million things going on, tons of appointments and work, it is ABSOLUTELY necessary to tie up any loose ends before your surgery.  Once the ball is rolling it is difficult to stay on top of everything.  I took a few days to get the house spotless, laundry done, bills paid or scheduled and got the living room set up for when I came home.  The worst thing is knowing there is a laundry list of things that need to get done, that you only think that you can do best, and you are immobilized or restricted.

Before chemo: Go try on some wigs.  Most likely you will lose most or all of your hair and having a few in stock will help the transition.

wigs, going bald, chemotherapy, breast cancer, cancer, radiation









wigs, going bald, chemotherapy, breast cancer, cancer, radiation

If wigs aren't your thing, try scarves or hats.  They are a great alternative and at some points in the hair falling out and growing back in process your head itches like no tomorrow and the mesh on the wigs can pull and hurt.  I found the "skull cap" that I am wearing below along with three others in the same style just different colors (black, white and grey) at the West Allis Women's Pavilion shop.  They have a variety of scarves, hats and wigs.

wigs, going bald, chemotherapy, breast cancer, cancer, radiation, skull caps, scarves

breast cancer survivor, survivor, head shaving, chemo, chemo therapy, wigs, hats

breast cancer survivor, survivor, head shaving, chemo, chemo therapy, wigs, hats

I found this hat at Target before Christmas and LOVE it.  It is super comfortable and covers up my eyebrows (since I don't have any) and I feel helps me look less washed out.

3. SHAVE YOUR HEAD: Hey, it might not be for everyone, but I absolutely was NOT going to be pulling out handfuls of hair.  It was hard to imagine myself without hair, but honestly, shaving my head was one of the best decisions I made.  With the help of family, friends and Denise, the best photographer EVER, I transitioned into the bald look.

From my long hair:

breast cancer survivor, survivor, head shaving, chemo, chemo therapy
To the side shaved:
breast cancer survivor, survivor, head shaving, chemo, chemo therapy

breast cancer survivor, survivor, head shaving, chemo, chemo therapy
 
breast cancer survivor, survivor, head shaving, chemo, chemo therapy

That was me "flipping the bird" to having cancer, or chemo have control of when I lose my hair!!

To a Mohawk:
 
breast cancer survivor, survivor, head shaving, chemo, chemo therapy, mohawk
To bald.....is beautiful:
breast cancer survivor, survivor, head shaving, chemo, chemo therapy

breast cancer survivor, survivor, head shaving, chemo, chemo therapy

breast cancer survivor, survivor, head shaving, chemo, chemo therapy

I 100% recommend this to ANYONE!  And, by the way, the scariest part was the anticipation.

4. FIND A RECLINER:  Sounds weird, but after I had my mastectomy it was really difficult for me to sleep in the bed for a few weeks, so I was lucky enough to get a recliner from my dad that would be my temporary home.  Even if you have to borrow one, trust me you won't regret it.  The hubs and I set up my little corner of the living room with a lamp, end table, chargers and my kit filled with everything that I needed to keep me preoccupied during my down time.


double mastectomy, recliner, comfy, recovery after surgery















5. HAVE SOME "ME" TIME:  Treat yourself before your surgery.  Get a pedicure, a manicure, massage or have a night out, see a band you really like, enjoy some drinks with family and friends.  If you are having a mastectomy, have a farewell party/dinner to the tatas.  With all the stress going on and an impending surgery it is well worth it to have some fun and tends to fall to the bottom of the list of things to do.

drinks, fun, enjoying time before surgery, surgery, me time, farewell to the tatas, spend time with friends and family, pedicure, manicure, massage

drinks, fun, enjoying time before surgery, surgery, me time, farewell to the tatas, spend time with friends and family, pedicure, manicure, massage

drinks, fun, enjoying time before surgery, surgery, me time, farewell to the tatas, spend time with friends and family, pedicure, manicure, massage























6. GORGE YOURSELF ON THE FOODS YOU WON'T BE ABLE TO:  If you are expecting to start chemo soon, be sure to get your fix of fresh fruits and veggies, sushi (if you love it), rare or medium rare steak, oysters, raw beef and onions, since you won't be able to for a while.

gorge yourself on foods you wont be able to have, sushi, rare steak, medium rare steak, fruit, lettuce, vegetables

















7.  TAKE THE HELP IF IT IS OFFERED AND DO NOT TRY TO DO IT ALL ON YOUR OWN: Friends and family wish that they could take whatever you are going through away, but since they cannot, let them help.  Whether it is driving to and from appointments or simply making freezer meals.  Let them do it, it makes them feel better to know they are helping.

8.  STOCK UP YOUR FREEZER: Speaking of freezer meals, if anyone asks you if you need anything or if there is anything they can do: HAVE. THEM. MAKE. A. FREEZER. MEAL. FOR. YOU.  The last thing you will want to do is go to the store, needless to say actually COOK.  I had a lot made for me and it helped a ton! (If you know someone who will be having a surgery make one for them as a gift)

9.  IF YOU VENTURE OUT, USE A MOTORIZED CART:

They are great for two reasons:
  1. Sometimes moving around isn't the easiest thing after surgery.
  2. You look bad ass driving one in Target. Beep. Beep.

10. STOCK UP:  Before my surgery I didn't know what I actually needed.  My mom helped by buying me a double mastectomy kit on Amazon and while it was really cool, I didn't use most of the stuff in it.

HERE IS WHAT YOU WILL NEED:

1. Pill dispenser: Between pain meds, anxiety meds (if you're on them) or anything else you take they are great.

2. Alcohol swabs/wipes: If you are getting drains, just stock up on these to sanitize when emptying them. (plus they are great for disinfecting cell phones, etc)

3. Thermometer: Better safe than sorry.

4. Disposable sterile gloves: When emptying drains it is best to have these so germs don't get in and cause infections.

5. An insulated mug: I got mine from Target in their $1.00-$3.00 section when you first walk in, but you can get them anywhere.  Why would you want one you may be asking? Because they don't sweat and you do NOT want condensation dripping all over the table...and you, and ice doesn't melt as fast.
Plus they are also good for drinks in summer.
insulated mug, sweating drinks, keeps drinks cool, target

6. Lotion, lotion, lotion: You cannot have enough and honestly my skin was like a desert through chemo so I practically took baths in the stuff.  I found Aveeno's lotion was awesome on my dry skin!

7. Topricin: This stuff is great for neuropathy.  I am not a medical professional, but in own personal experience it definitely helped with the tingling and numbness that I had in my feet and still does.

8. Hand sanitizer:  Obviously you don't want germs around you.  The hubs went crazy with this stuff.  It was everywhere in our house.  Bathrooms, bedrooms, kitchen, end tables, cars, hallways, the basement, my purse, closets.  Well not closets, but I would NOT have been surprised if he put some in there.

9. Tank tops:  If you have a mastectomy, or auxiliary lymph node removal surgery like I did, I found these to be the best thing since sliced bread.  I bought one in each color.  My boobs (foobs) with the expanders in are awkwardly shaped and to have these to quick throw on are great, along with the built in bra, you will get the added support you need.  I also found that after my lymph node removal surgery, the movement in my right arm was EXTREMELY limited, since I had cording issues, so these tanks came to the rescue again by making it easy to get a shirt on.

10. Stool Softners: Obviously double check with your doctor, but after my surgery, between the anesthesia and the pain medications I was on and through the time that I was going through chemotherapy, they bound me up.  Once I started taking these regularly it helped a TON!  Sorry if it is TMI but it's a fact.

11. Biotene Mouth Wash: Chemotherapy makes your mouth extremely sensitive and the alcohol in regular mouth wash makes your mouth feel like you gargled with bleach.  Trust me.  I tried it.

12. Miscellaneous fun stuff:  Candy, sleazy tabloid magazines and other fun stuff to pass the time while you heal.

13. Back Scratcher:  Get one.  Absolutely get one.  You won't realize how limited your movement is until it's too late and you're stuck with a scratch you can't itch and are awkwardly trying to use the corner of a wall, cabinet, using a piece of furniture to stop the torture.

***If anyone is interested in one of these kits, either for yourself or a loved one, I can customize one for you.  Just email me if you or someone you know may be interested or have any questions***

11. GO TO THE DENTIST:  If you are going to be going through chemo it is recommended to see your dentist before because at times during treatment your counts can be low and it heightens the chances for infection.

12. SEE A FERTILITY DOCTOR:  If you are going to be going through chemo and still want to have a family in the future it is best to speak to a doctor about your options.  I'm no doctor, but if anything make that one of your first questions because timing is everything when it comes to aunt flo-and starting the process of the shots and appointments.

see a fertility doctor, chemotherapy, follistim, ganirelix, pregnyl, menopur, breast cancer, infertility treatments

I feel it is best to know ALL of your options.  I did the fertility route and I have no regrets.  I detail my experience here and here.  I was blessed to have the help from family with this, but if you are worried about the cost, like most women are, I have heard that Fertile Hope can offer assistance with this.

our babies, embryos, future kids, AA B+ quality embryos, infertility, egg harvesting treatment, breast cancer

13. CHECK OUT LOCAL PROGRAMS:  I contacted the American Cancer Society as well as signed up for a Look Good Feel Better session.  BOTH are great resources.  Look Good Feel Better is an amazing program that helps assist with dealing with the physical side effects, including hair loss, skin changes for both men and women and teens.  The American Cancer Society has links to many resources for finding support and treatment, transportation and learning about cancer.

14. SEE A GENETIC COUNSELOR: If I had gone back and done things over, I would made this my FIRST appointment, and to anyone considering it: DO IT!!!!!  I had no family history and being diagnosed at 27 it scared me.  So to stay informative on my health and future activity I had a full panel done.  I found out that I had Li-Fraumeni and if I knew that it would have changed things with my fertility-egg harvesting procedure.  It is sad that I was not even recommended to see one, I was the one that pushed to continue with a full panel, or be tested at all.  I detail my testing here and here and here.  One thing I was adament about from the beginning was radiation.  It was a personal decision, and while other people decide to do it, I did not.  Needless to say I made that decision for getting the results of my full panel.  People who are diagnosed with Li-Fraumeni cannot have extensive amounts of radiation because it is almost a guarantee that they will get another cancer.  While I decided from the get-go not to, I do not know what I would be doing now if I had gone through with radiation.  That is why I recommend going through with it in the beginning, as soon as you are diagnosed.  But obviously check coverage with your insurance because it can be expensive.  I was blessed that my counselor fought for me to have it covered and I am grateful!

Being diagnosed with cancer is scary.  Not just for the person who is diagnosed, but their loved ones as well. Through my experience so far, I picked up on a lot of tips that I thought could help others.  Hopefully one of these could help you, or someone you love.  I'm no doctor, but if you have any questions about my journey I am an open book and can try to answer any questions based on my experience!!


On a lighter note I'm a blonde now.  Or at least until I decide to take the wig off.....Yay or nay? I kinda like it.  I feel it spices things up!



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