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. 

Bump in the Road (Part 2)

Part 1, in case you missed it.

 

Finding out I had cancer was terrifying.

My thoughts went immediately to my kids. They are so young. My son had just turned 11, my middle daughter was 7 1/2, our youngest was 5, almost 6. How could I look at my kids and tell them I have cancer without scaring them? I didn't want them to see their strong, active, always on-the-go mom as sick and weak. Like a lot of families, mine doesn't run well without the mama running it. I had to focus on getting better for them and my husband.

When we got back from the OB/GYN, my mom was at our house watching the kids. She could tell by my tear-streaked face that it was cancer. She hugged me tight, I took her in our bedroom to tell her what I knew (not much). She said she would come to any appointments or watch the kids anytime and that she could completely clear her calendar to be as available for us as we needed. As she left, I told her to text me when she got home so I could call and tell my dad when she was there with him. My dad doesn’t always deal well with stress and has been battling his own serious health concerns, so I didn’t want him to be alone when I told him. My parents are strong Christians and so I knew I could count on them to begin praying immediately.

The nurse had given me a list of surgeons after the biopsy. One of the doctors on the list was familiar because I had had surgery with her about 12 1/2 years ago. I called her office to make an appointment as soon as we left the OB/GYN's office after officially being given the diagnosis. They got me in on Monday, January 6th at 9am.

Next I called my sister. She can be a tough one to reach. I called and she answered but asked if she could call me back in a couple minutes. Now, I know my sister and know that when she says that I won’t hear from her from months. I said, “that’s fine, but you actually need to call me back. This is important and urgent.” She said that she could talk now instead. Told her the news and she started crying and wanted to know what she could do to fix it. Obviously, nothing, so I told her I’d call her when I knew more or needed something. Next up was calling my brother and sister-in-law; my SIL wasn’t home, so I talked to my brother and asked him to tell his wife the news. My brother was awesome; he prayed with me immediately, but was very emotional. I’m close to both my siblings and these calls were terribly difficult to make.

My mom went with me to this first appointment. First I met the Nurse Practitioner, T1. She is the sweetest, gentlest person. She was so compassionate toward me and my mom; meeting her was a great comfort for my mom especially. Then came in Dr. R. She is a tiny, but powerful woman, an amazing surgeon and has the perfect bedside manner for me. She is very data driven, very evidence based. She had already looked at my radiology images, examined me, then did an additional ultrasound there in her office.

After that, we sat down in the conference room with her Nurse Navigator, T2. T2 was also incredibly compassionate and kind. She gave me a binder that the hospital gives to all newly diagnosed breast cancer patients. The binder contains information about the types of breast cancer, how they are graded and all the treatments for cancer: surgery, medical (chemotherapy & other drugs), radiation. It talks about reconstruction options and what to expect during each stage of the process. It had information about the Cancer Center at the hospital with all the resources they offer to patients and families (dietician, social worker, library, shuttle, support groups, educational seminars, etc.). It had information about integrative medicine; a section for me to keep my medical records; a spot for me to keep all the business cards from my care team. Later, my husband and I would say that if you're gonna get cancer, this is the type and now is the time - there are so many resources and so much money being thrown into researching and finding a cure for breast cancer. Hopefully one day soon there will be a cure for every woman who is diagnosed.

Finally Dr. R joined us again. She told me that we had caught it early. I had probably an early Stage I or Stage II Invasive Lobular Carcinoma. If the 2 spots were truly separate, than it would be Stage I. If they were really just one spot (they were connected), then because they were less than 5cm apart it would be Stage II. They didn't suspect any spread to my lymph nodes (good). I would need a Breast MRI to confirm what she was seeing on the other tests. If it all came back as suspected, she recommended a lumpectomy. She said that with the type of cancer I had, when the tumor is smaller than 5cm a lumpectomy is just as effective as a mastectomy. She also recommended I undergo genetic testing. And if I was considering any type of reconstruction on my breast (a lumpectomy would've left me very uneven) I should meet with a plastic surgeon. I also needed to go have some bloodwork done and a chest xray - I was sent immediately for those two after I left Dr. R's office.

The great part about having a Nurse Navigator is that she handles booking appointments and coordinating tests for me so I don't have to do it myself. T2 made me an appointment with Genetics for the next morning (January 7, 2020). I filled out their online survey/questionnaire (detailed family tree and history) before going. The appointment was pretty easy and I went alone. I met with a genetic counselor, K, a phlebotomist came in and drew a couple vials of blood and that was that. They would call me before running the tests to let me know how much it would cost. They would deal with checking with my insurance for me and if my insurance didn't cover it, they had various pricing models for help. It would take several weeks for results to come back.

Next up was meeting the Plastic Surgeon. My Surgical Oncologist, Dr. R, referred me to Dr. M. She has worked with him for years and thought I would like him. T2 made my appointment with Dr. M for Monday, January 13 at noon. My sister had been wanting to come to some appointments with me to help support me and so she joined me at the Plastic Surgeon. The nurse, D, met with me first. She took a few pictures of my chest, and explained the process of reconstruction to us. She showed us the different types of implants. I asked her about reconstruction using my own tissue (such as DIEP flap and others). She said Dr. M doesn't do those types of reconstruction, but they would be happy to refer me to another doctor so I could get all the information I needed to make the best choice for me. Then Dr. M came in - he's totally cool. He was very professional, had a compassionate bedside manner, took time to answer our questions. My sister had more questions than me, which is why you take a second set of ears to all these appointments. I think I was just in too much shock to really comprehend what was being said or to think of questions. I thought the Plastic Surgeon was a pretty low stakes appointment, but I was wrong.

Turns out, the Plastic Surgeon is extremely involved in my surgical care. I thought it was more like, he shows up at the end of the surgery and tosses in an implant. Um, no. Implants are the last step in this process and don't go in until after radiation is all done. He would place a tissue expander in my breast at the time of the first surgery; then I would need to go get it filled every week until it's the correct size. Then after all the cancer treatments are done, we do the reconstruction with the implant. Didn't see that coming and I think my poor, sweet sister was traumatized for life after that appointment. She tried really hard to be strong for me, but she called my mom after the appointment and cried.

T2 had gotten me an MRI appointment for noon on Friday, January 17th, but my surgeon, Dr. R, wanted it sooner - she didn't want to wait that long, so they were able to move me up to 8am Tuesday, January 14th. For that appointment, my mom came with me again (many of these hospital locations are women only, so my husband couldn't come to these appointments). I changed and the technician took me back. This was pretty easy. Lay on my stomach on a table with my boobs hanging down through a hole. Lay very still...do not move for 15-20 minutes. The machine whirred and clicked all around me while I prayed a Rosary. That was it. Results would be sent to the doctor right away.

Later that day at 3:16pm, Dr. R called me with results from the MRI. She said the 2 spots were connected; they were actually one large tumor that was 7cm across. There was no evidence of cancer in my right breast and no evidence of cancer in my lymph nodes. Because the tumor in my left breast was over 5cm, a lumpectomy was no longer an option. I would have to have a mastectomy. My choice was now to do a single or double mastectomy followed by radiation. Due to my age (44) and the cancer being invasive lobular, there was a high chance of the cancer returning in my right breast in the future, so a double mastectomy could be medically justified, but not required.

I chose a double mastectomy with reconstruction to start immediately. I confirmed my decision with my husband and called the surgical coordinator at Dr. R’s office to get scheduled. She worked with Dr. M and the hospital to coordinate everyone’s schedule and get me scheduled for surgery on January 30. 

 

Keep reading Part 3

The Week Links (vol.1)

Every weekend I grab my iPad and sit for a couple hours scrolling through lots of blogs. A few of my favorites include links to things the writer loves...recipes, clothes, articles, etc. These are some of my favorite posts to read and it’s how I’ve found lots of the blogs and sites I follow.

Maybe you’d like some of the things I’ve used or saved recently? None of these are affiliate links - just stuff I found that I loved and wanted to share.

I’ve been Cooking & Baking

We grilled out last weekend and I made this zucchini. So tasty and different.

The grilling out was an excuse to have my parents help us eat this Pavlova. It was definitely worth eating and was probably the best thing I’ve eaten this year. My niece and I are doing baking challenges and this was our first pick. What a winner!

Had a craving for chocolate chip cookies, so I tried out this recipe. Delish and the cookies were still soft the next day!

We had some corn on the cob too and this version never lets me down.

Then needed some Rice Krispie Treats. Who could resist?!

Recipes to Try

For Breakfast:

I think my little monkeys would enjoy this for breakfast.

I want to believe I could get up early and surprise my family with these one Saturday.

For lunches or snacks:

I know they’re an appetizer, but I’d make it a meal at lunch.

These sammies look easy and scrummy!

For dinner:

I’ve never cooked pork tenderloin, but this looks like something I’d eat.

This easy dish will save me next Taco Tuesday.

For dessert:

I can’t seem to make cannoli shells, but with these that problem is solved.

Look how delectably dark this chocolate mousse cake is. It’s like it’s ready for Halloween!

Amazon love

This t-shirt is out of this world. Runs a smidge small, but so cute!

Ordered this dress and it’s perfectly soft against my sensitive skin.

My new infinity scarf veil came in plenty of time for Miss A’s First Holy Communion next month.

Bump in the Road (Part 1)

On November 18, 2019 I took this picture:

I was at the hospital for my annual mammogram. #over40perks

I remember thinking I would post it on Facebook with a reminder to my lady friends to do their self breast exams and get their annual mammogram. I know many women put them off, though I had never found them painful or uncomfortable, I know that fear is a very real deterrent for plenty of women.

I ended up not posting it. I either forgot entirely or I got self-conscious. It certainly isn’t the most flattering photo I’ve ever taken. 😂

On December 5th, I received an email from the hospital to check my online portal. Something I NEVER do. But something made me check it that day. There was a letter saying they wanted me to come in for “additional images.” No big deal. I’ve been called back before for “additional images” so I wasn’t at all alarmed. I simply called and made another appointment. They set me up for December 23rd (Monday). They didn’t seem in much of a rush to get me in. Then the hospital called to schedule the additional images, but I had already done that. Then my OB/GYN's office called to tell me to call the hospital to schedule additional images, and I told them I had already done so. All those weird calls made me check the online portal to read the radiology report and see why they wanted these “additional images.”

I opened the report and scanned it. The phrase “spiculated margins” stood out. I had no idea what that meant, so I googled it.

Do NOT google it.

Do NOT EVER google it.

The search told me there was a greater than 87% chance of the spot being cancer. I closed google and have not googled anything related to medical stuff since.

I tried to put it out of my mind. I went about the rest of December doing all the things we do in December I stayed busy with the kids and their activities; I decorated and prepared for Christmas. I baked.

Monday, December 23rd (Festivus) arrived and I went to the hospital for those "additional views" bright and early at 8:30am. They were already behind so it took ages before I was called back. I snapped a picture and sent it to my anxious husband at home telling him I was still waiting for my turn. How do you like my purple dollar store reading glasses?

I had a mammogram with multiple views, then an ultrasound, then another mammogram. They said I would have results before I left, so I sat back in the holding area to wait. The nurse came to get me and took me to a small conference room. She sat me down and said I needed to have biopsies on Friday, December 27th. Because of where the 2 suspicious masses were located they would have to do two different types of biopsies. One would be ultrasound guided (for the one they could see on ultrasound) and one would be mammogram guided (for the one they couldn't see on ultrasound, but could see with mammogram).

It was Christmas. I have kids. My husband was sick in bed with flu-like symptoms from December 23rd-26th. I had this hanging over my head and tearing at my heart, but needed to push through and make good memories for the kids. I think we ended up having a good holiday - I don't think the kids really knew what was going on. But then again, they did notice me crying occasionally. I was being extra permissive with them.

On December 27th, my mom met me at the hospital for the biopsies at 9am. My husband, since he was still sick, dropped me off and stayed with our kids at home. Besides, they don't let men back in the mammogram radiology area anyhow. We checked in, I got changed and we sat down in the waiting room until they called me back.

Finally it was my turn. The nurse said they would do the mammogram guided biopsy first and she took me into the procedure room. When I saw the table & machine, I broke down sobbing an hyperventilating. It was all of a sudden very real. The reality of getting a biopsy for suspicious masses in my breast hit me hard.

The nurse offered to talk to the doctor and see if they could try to biopsy both areas using the ultrasound guided method since one of their best ultrasound technicians was there that day. The doctor agreed to try it and the ultrasound technician came to get me.

She was a young woman, probably in her 20s and her name was Agatha. As in St. Agatha, patron saint of breast cancer patients. She was as good as they said she was and the doctor was able to get the biopsies from both spots.

Results would take 3-5 days.

My doctor's office called to make an appointment with me for 8am on December 31st to get the results. On December 31st, at 7:40am, my doctor's office called to move my appointment to January 2nd since results weren't available yet.

ARE YOU KIDDING ME?! I would have to wait over New Year's to get the results?! I knew they wouldn't release them in my online portal until after I spoke with my doctor, so checking for the results there was pointless. Not that it stopped me from checking relentlessly.

Later in the day on December 31st, I noticed that the results in the online portal changed from "in progress" to a couple specific hormone receptor tests. I'm not a doctor and I'm not in the medical field, but I know that they don't run hormone receptor tests on healthy tissue. So on December 31, 2019, I realized what I would hear from my doctor on January 2nd, though it didn't really sink in and I couldn't bring myself to tell my husband or family.

That night, I went to a New Year's Eve Party at our Parish with my parents and my girls. My husband stayed home with our son who was ill. Here's me trying to pretend I didn't know what I knew:

On January 2nd, 2020 my husband and I went to my OB/GYN's office at 8am for the results.

She said she was sorry, it was cancer.

She said I had done everything right by going for my mammograms every single year.

She said they had caught it early.

She said I would be fine.

She said this would be a bump in the road.

 

Keep Reading Part 2, Part 3