Bump in the Road (Part 4)

After telling our kids and family & friends, next I started a list of all the other people I would need to notify:

• Our Priest (ask for Anointing of the Sick before surgery)
• The kids' school (principal, teachers)
• Catechism teachers
• Soccer coach & team (I was the team manager)
• Gymnastic coaches
• Dance teachers
• Dentist (get a cleaning before surgery)
  
• Endocrinologist (have thyroid checked and monitored during recovery)
• Notify Be the Match (bone marrow donor registry that I am on)
  

I also started a list of all the things I needed to do to prepare for recovery:

• Cancel the gym membership for our son (we wouldn't be able to take him)
• Cancel my monthly facials
• Cancel my monthly eyebrow shaping
• Buy recovery clothing items
• Buy recovery equipment
• Stock up freezer meals
• Figure out out plan for a soccer tournament that was already scheduled out of state
• Send out Valentine Day Party planning info for Kindergarten (I was room mom)
• Prepare a daily schedule for my parents who would be helping with the kids 

 I called the principal and asked if I could drop by to chat for a few minutes. Mr. J is a wonderful Christian man who leads our local elementary school. I went up to his office and shared the news with him. He immediately reassured me that he and his family would be praying for me. He reassured me that our school community would rally around the kids and would support them in any way they needed. He said he would let the teachers know for me and would reach out to the social worker just in case they started seeing the kids acting out or upset during the day at school. 

A couple of amazing moms from the 2nd grade offered to set up a meal train and a ride train to get the kids to school & home each day. What a blessing that was! I was so nervous to accept help; I'm very independent and asking for and accepting help is absolutely foreign to me. I am the helper not the helpee. But I really couldn't have made it through without all the incredible families from our school who drove my kids to/from school, took them on play dates, and brought us meals. I'm blown away by their generosity. We love our Wolves!

There is actually a lot of equipment that can help make recover after a mastectomy much more bearable. It's not all 100% necessary for everyone, but here are the items that I really found useful and comforting (none of these are affiliate links, they are just products I found that I used & liked - I also tried to buy from small businesses as much as I could in the time frame I had - many are run by breast cancer survivors):

• A recliner: my sister loaned me a reclining chair to use during recover. Life saver! I couldn't lay down comfortably for several weeks/months. Having the recliner to sit and sleep in was so helpful.
• A contoured pillow for across my chest and under my arms. I bought this one from Pink Pepper Co. and really loved it. I still use it more than 6 months later. It is very comfortable to keep your arms away from your drain sites and to protect your sensitive chest.
• A seat belt pillow. I bought this one from Pink Anchor Pillows and still use it in the car whenever I have to go somewhere. This was one of those items that I would say borders on necessary. Like, they should give prescriptions for them.
• A shower lanyard. My plastic surgeon made me a rudimentary one in the hospital but breaking off a piece of oxygen tubing and tying it in a knot, but the lanyard was much easier to use. After surgery I had a relatively heavy pain pump hanging from a pouch around my neck and two bulb drains that hung from my sides (from the ribs under my breasts). When I showered I would just hang the pain pump and drains on the lanyard so they didn't hang and pull. So much easier than trying to juggle them in my hands. I already needed help in the shower (thanks, mom), but this freed up my hands to help me stay balanced and wash myself.
• A few zip up hoodies. I bought some Hanes brand ones from Amazon. My surgery was in the winter, so zip up hoodies were a must for staying warm. You won't be able to lift your arms so putting on a shirt over your head is impossible. Zip up and button down tops are your friend. For many, many weeks. I didn't go with "mastectomy" style shirts with built in drain pockets because I thought they were pretty ugly, and didn't come in black, which is my favorite color. Also, I just couldn't picture myself wearing them after recovery...but zip up hoodies. Yes, I'll wear those forever.
• Pink Pockets. While I didn't purchase mastectomy shirts with drain pockets, I would still need something to hold up the drains and keep them from hanging and pulling. They had attached safety pins at the hospital so I could pin them to my clothes (they pinned them to my gown), but that seemed impractical at home. I found these Pink Pockets that use double sided fabric tape so I could stick them in any shirt or robe and remove them when I didn't need them anymore. I bought 2 packs, but really only used 1 package. They stay on much better than I anticipated...in fact, they are still in my zip up hoodies after dozens of washes.
• A comfy robe. I'm not a robe wearer, but I bought one to have in case I needed it after surgery. I don't think I ever wore it. It's a lovely robe and maybe I'll use it one day, but I didn't find it necessary. Just not my particular style or comfort level. I found it at Target.
  
• Button up pajamas. I found 3 pairs of button top pajamas in very soft fabric at Target. They're all Christmas pajamas - they were on clearance. I still wear these because I have hot flashes at night so if I wear a tank top under them, I can rip them off pretty fast.
• Slippers. Again, spending so much time at home and being a little unsteady on my feet, slippers were great. I found some at Target.
• Post-surgical bras. Your surgeon or plastic surgeon should give you a Rx for one. You get them at the medical supply shop or there are some specialty shops that sell them. I bought 2 extra and got one that my insurance covered. I ended up not using them much. The drain holders were awkward and the under breast elastic/gathering was very uncomfortable for me due to the type of incisions I had. Also, I lost a lot of weight after surgery so by the time I could tolerate wearing them, they were too big for me. One of them is tank top style and I use it occasionally. By the time I was ready to start wearing a bra again, I ended up going with these (my favorites) and these.
• Other useful items: water bottle to stay hydrated, small table to keep your things on near where you sit, books/magazines, tray for eating meals in your sitting place in case you don't feel like sitting at the dinner table, a stack of thank you notes and stamps.

The last thing I did was prepare info for my husband and parents. I made a weekly schedule that included the who, what, where, when and what supplies were needed for everything in our calendar. Our weekly activity calendar was pretty crazy between school, safety patrol, catechism, soccer practices and matches, gymnastics team training, and dance classes. I also made a list of what each kid takes in their lunch and for snack. 

Bump in the Road (Part 3)

 Once I had a surgery date I felt like I could let people outside of my family know and start notifying the people and places who would need to be aware. We also needed to tell the kids.

I also stopped at the Cancer Resource Center at my hospital. The nurse navigator there, "G", was so helpful and patient with me. She listened to my concerns, she loaned me a couple of books from their library about how to tell the kids. She gave me a book called The Silver Lining to read. The book is about one woman's breast cancer story; she is a nurse and shares all the details, encouragement, funny stories. I devoured this book in about 2 days. It was extremely comforting to read her story and hear her experience. It took away a lot of the fears of the unknown.

I also read the books about telling the kids in an age appropriate way. At the time our kids were 5, 7 and 11. The younger two girls fell into the same age category for their ability understand and what their main concerns would be. Our older boy fell into a different category. Remembering that our kids don't have experience with the word "cancer" and that it likely wouldn't trigger strong emotions and worries about death, we sat them down on the couch after dinner one evening and began a discussion with them. We started with the fact that they probably noticed mom going to the doctor a lot lately and that they probably had seen me crying sometimes. 

We said that the doctors told me that I have breast cancer; we explained that our body is made up of cells that all do specific jobs - some carry oxygen, some make us strong like our muscle cells, some help us absorb food and convert it to energy, our skin cells protect our body from germs - normal cells are healthy and do their job right to keep a person healthy, they make enough copies of themselves to keep our bodies healthy. Cancer cells are not healthy cells - they do not make a person healthy, they can make a person very sick, plus because they're broken they don't know that they're bad and they make too many copies of themselves and they all group together and make a tumor.

We explained that God gave scientists and doctors so much knowledge and wisdom that they can help people who have these bad cancer cells. They can do surgeries to cut out the bad cancer cells, they can give people medicine to help kill the bad cancer cells, and they can even shoot them with lasers to kill them. I would be having surgery to cut out the cancer cells. My doctor would give me some medicine that would make me sleep and while I'm sleeping, she would cut out those nasty cancer cells. After that they would wake me up and give me medicine so I don't hurt too much while my cuts heal. We assured them that the doctor was very confident that she could help me get all better and that she would do her very best. 

I told them that they might see me crying sometimes and it was because I was scared. It's OK to be scared. Some things are big and hard to understand and that can be scary. If they are scared, it's OK. They can cry if they need to do that; they can also ask me any questions and I will do my best to answer them. If I can't answer their question, I can ask someone who can answer it. 

We told them that it would be a very difficult year for all of us, but that we would make it through it as a family. After my surgery I would have to rest a lot and I wouldn't be able to drive them to school, soccer, gymnastics, dance or anywhere else for a few weeks. We reassured them that grandma and grandpa would be here a lot to help me and to take them to their activities. They might have to miss something every now and then, but if they had to stay home we could spend time doing something at home together like a game or a puzzle.

The kids cried a bit, mostly because I cried a bit. Our youngest, Miss E, didn't like it when I cried because it made her cry (sweet baby). As anticipated, their concerns and questions followed the age appropriate things we read about. The youngest was concerned about what would happen on her birthday (about 1 week after my surgery). Miss A, our middle child, was concerned about her activities and how it would affect her. Our oldest, Jr., was more worried about what his friends would think and what extra things he might be asked to do around the house. Each kid over the next several days was taken aside and given an opportunity to ask me anything they wanted to ask. The littler two just wanted to make sure I wouldn't feel it when they cut the cancer cells out. The older one had some more specific questions about cancer that we answered honestly and with age appropriate information.

Next up was time to share the news with others outside the family. I had told a couple of girlfriends already; I had actually told them about the call back and that I was a little nervous because of the "spiculated margins" wording and what I had found on Dr. Goo.gle. These particular girlfriends have been my crew for more than 25 years. We have been through so much together and it definitely didn't feel right to keep this from them. I also knew they would pray for me, which is the most important thing!

My mom had been given the go-ahead to tell extended family. So all I needed to do was put together a Facebook post. What a weird thing to say. I keep in touch with most friends on Facebook and there are so many people dear to me, I would run out of time if I had to contact each of them individually and have a separate conversation about this every single time. Of course, after I put it on FB, many friends called and texted, which was wonderful to hear from so many people reaching out in support and faith.