Be Vigilant!

When My was diagnosed with breast cancer and learned that she had the BRCA gene, her doctor strongly encouraged my siblings and I to also get tested. Lynne and I opted to go together to get our results. I remember my husband, Ryan, saying: “Thank god you guys were both negative. That would have been really hard and awkward if one of you was negative, and the other was positive.”  The thought had never even occurred to me. Of course we would go together. Regardless of what the outcomes were that day, I would always want my sister there with me.

We were both very excited learning our good news. It felt like we had really beat the odds. Van had already been tested and was negative. Since my dad was a carrier, we each had a 50% chance likelihood of having the gene. My friend Michelle, a super smart actuary, told me the there was a 12.5% chance that we’d all be negative, so I felt pretty lucky that we had dodged that bullet.

After hearing we were negative, I remember asking the doctor: “so we won’t get breast cancer??” and I vividly remember her saying “well I can’t guarantee that, but your chances are the same as everyone else.” In my mind, and maybe I was being naive and just on the high of learning the good news, it meant Lynne and I didn’t have to worry about getting breast cancer – we were negative.

So when we learned that Lynne had breast cancer, in addition to all of the other horrible emotions, it was also very confusing. It made sense (even though it was very unfair) that My had it; she had the gene. But Lynne? She was supposed to be okay.

But here we are.

I've had a lot of guilt since I learned that Lynne had breast cancer that I didn't know how to support her or be there for her, so I was so glad that I was able to finally make it to a treatment. When I got to the hospital, the first thing she did was give me some Similac coupons that she picked up for me. I have two little ones under the age of two, and on most days I struggle between getting an extra five minutes of sleep or washing my hair before going to work. And here Lynne was… taking care of her two little kids, scheduling vacations and weekend activities, working, battling cancer, and still having the time to look for deals for me. Lynne, I am in awe at how you do it all. I hope you and Mike know that Ryan and I are always there for you if you guys need anything.

It was the first time I saw Lynne completely without any hair, and maybe I'm a bit biased, but I think she rocked it!! She looked so good!! She looked confident and as My calls her, bada$$.

I was very impressed by the hospital, and everyone I met that day. The facilities were very clean and modern, the nurses and staff members were all so welcoming and everyone knew her name, her doctor who she wasn’t even scheduled to meet with even stopped by during her treatment to check in on her. It made me feel good to know that my sister was in good hands.

Lynne’s treatment went well. She was even able to nap a bit (and I took full advantage of that!) She shared that she hadn’t been sleeping well, so I was glad that she was able to rest for a bit.

At one point during her treatment, I went to the restroom. Next door to Lynne’s room was an older woman who was also getting treatment. She was alone, and it made me so sad that she didn’t have anyone there with her. Everyone should have a chemo buddy.

After treatment, we went to lunch and to pick up the kids from camp and school. When I went into Katherine’s preschool class, a little girl in Katherine’s class said, “why does Katherine’s mommy have hair today?” After telling her that I was their aunt, my immediate reaction was to look at Katherine and Carter to make sure they were okay. They were fine, another reminder that kids are more resilient than we think, and that they will be okay.   

Back at the house, I had SO much fun spending time with the kids.  We spent most of our time making emojis out of construction paper. We laughed when Carter made the poop one; Katherine went the more traditional route and made a heart and unicorn. At one point, Carter pulled up the face emoji with the medical mask and asked if I could help him make it for his mom. When we finished making it, he wrote “hope you feel better mommy” on it. He's just the sweetest, and moments like this make me feel like he'll be stronger and more compassionate because of going through this.

I’ll end by saying, please be vigilant about checking for breast cancer. This is something I need to be reminded of myself. Do self-exams at least once a month. Both of my sisters caught their breast cancer on their own. Lynne had just been to her doctor in the winter and they didn’t find anything. She was told that she could do annual mammograms going forward. I hate thinking about what would have happened if she didn't find it on her own. I have a mammogram scheduled next month!   

#8 down--2/3 way there...WOOHOOO!!

I often forget I'm 'sick' or am battling cancer. Other than the hair loss, I feel and look the same or at least I think I do! Treatment days, to be expected, are a tad tougher than the rest of the week, especially on longer infusion days. I have been fortunate enough to bounce back fairly quickly after treatment sessions but the energy fades as the week progresses.  

For the most part, I feel as a family, we are living our lives as close to normal as possible.  I'm working when I can. The kids are at school or camp.  We have action packed weekend plans filled with get togethers with family and friends, birthday parties, sport activities, etc.  I know this will not always be the case but for this phase of treatment, I'm so happy and grateful that it hasn't disrupted our lives all that much and we have adapted.

This past weekend, we took the kids to Six Flags and they got to spend the day with their cousins and friends.  The kids had a blast!

This week for the first time, I had moments when I felt sick or am reminded to slow down more often than usual.  I took Katherine to the dentist on Monday.  It was also Carter's first time going to a new camp where he is taking the bus three towns over.  It was a hectic morning so I skipped breakfast and took my daily medicine without food.  I generally always try to take medicine with food.  While at the dentist office, I felt incredibly sick.   I felt like I needed to throw up so I excused myself while we were waiting for the receptionist to check us out. Unfortunately I didn't made it into the bathroom and projectile vomited on the floor!  😕  Katherine was so confused and asked me why I was spitting up. I felt incredibly embarrassed but I didn't see this coming.  Luckily since I had not consumed anything but water, the mess wasn't that bad. Have to always find the positive in things! 😊 This is one of the thing I'm learning about cancer is sometime things sneak up on you.  I don't know what's coming around the corner.  From this experience, I've learned to have my brother, JD's trusty yack pack close by in situations like these!  😊  JD had sent to me a supply after I threw up when I had my port installed.

At work, I do not break for lunch often but enjoy running errands occasionally, if I can.  It helps break up the day, gets me out walking and I'm able to some fresh air. This past week, I ran out to Wegman's.  Such adventures would normally take 30 mins.  The adventure this week took me closer to an hour and all I managed to pick up were a handful of things.  I quickly learned that things simply just take longer.  I can't walk as fast to the car.  I occasionally have to pause to catch my breath and sit for a few mins in the car before driving.  The hallways lights in the corridor of the office also seem to bother me in addition to random smells.  I'm super sensitive or so it seems to everything! The best way to describe my symptoms is that it reminds me of being pregnant minus the belly and the joys of feeling kicks.

Since our vacation, it has been a nice break between treatments but we are back on track.  I had my #8 treatment today with Nurse Phil.  Woohoo...I'm 2/3 done with this treatment plan!!  I hadn't been assigned to him prior but always thought he was great since I've seen him before interacting with other patients.  He was very nice and took the time to explain things.  Mike and I were talking to Nova, the social worker.  She had popped in to see how we were doing.  I told her about Carter's struggles with my hair loss still.  Last time we talked to Nova, she gave us a video to watch and share with the kids on hair loss during cancer. We have attempted to show the kids but Carter was not interested in seeing it. As we were talking to Nova, Phil came back in and said he was going to prep my premeds and that we can continue to talk.  I reminded him that I'm super sensitive to medicine.  He assured me he reviewed my files and would proceed slowly like nurse Ann.  I trusted him and said okay. As I was talking to Nova, he was setting up and told me what he was doing.  I was only partially paying attention and and all of a sudden, I felt this huge rush and started coughing.  I was in a haze and wasn't feeling well.  I then realized he had pushed the Benedryl via IV instead of slow dripping the medicine.  Luckily this time, I wasn't shaking but felt the chills.  Mike was on his computer working and didn't realize it either until after the fact.  I generally have this tickle in my throat and cough quite a bit when I'm administered Benedryl via the IV.  I started coughing and he knew something wasn't right and looked up.  Phil too realized something was not right as my speech got slower and I was coughing to catch my breath. I was in a fog!  I slowly told Phil that I assumed he would slow drip the Benedryl and not push the medicine based on prior experiences. He apologized profusely and said he will update the order form and for the remainder of my treatments as that was not specified in my record.  It was a very sleepy treatment.  I did manage to get some shut eye.  I'm sure Mike appreciate that, although I did boss him around to fine me a snack before falling asleep.  😜

It amazes me how the drug is administer affects how I feel.  I guess that's how it should be but again a new revelation because up to this point, I haven't taken or given so many medications.  Speaking of revelations...as we were checking in for the appointment, I asked Mike what the back of my head looked with a baseball hat.  He said I looked like a cancer patient!  I didn't believe him and asked him to take a pic.  Not sure why but I have this illusion that my hair is somewhat full. Unfortunately when he took the pic, I could not believe it!  It was the first time I felt like I just really need to cut it all off. I did not want to look like a cancer patient and much rather be bald than look like what I was seeing!  I have been holding on for Carter.  I decided it was time to rip off the bandaid and cut off what hair I had left.  Mike did the honor a little while before we went to pick up the kids at camp and school.  I was really worried about how the kids would react but they were great!  I waited until we got home to take off my baseball hat.  They didn't seem to notice immediately.  Katherine commented first and said she liked my new haircut!  Carter said I looked different and didn't say much other than saying he didn't want people to make fun of me.  He has been so exhausted from camp.  I can see the wheels spinning in his head as he's processing.  I know he'll come around and I'm so happy their reactions were so great!  We will use clippers this weekend to clean up the new do but here are some pics.

     

Life is a beach!

We vacationed for a week in South Carolina. It was nice to escape and enjoy life pool side and at the beach. I tried my best to forget and simply enjoy my time with the family. We celebrated the 4th of July like no other year prior. We sat on the beach and were able to see fireworks from every direction. It was fantastic and memorable!

The trip was fun but at times difficult. I wore my wig for the first time! I went back and forth on bringing it but knew my hair was barely holding on. In the end, I was happy I packed it. It definitely took a bit of getting use to. At times, it was very hot and uncomfortable, especially in the heat and humidity! It's interesting that once I lost my hair, I can not wear fitted hats. They are just too big! I didn't realize how much hair I had. Something else I learned during this trip was how susceptible I am to sunburns with chemo. I was warned by the doctor and nurses prior to the trip to be careful in the sun.  On the beach, I sat under an umbrella. I fell asleep one afternoon and my toes must not have been not covered. Ouch! Boy, did I ever feel pain!!

During our time in SC, I lost a good portion of the remainder of my hair. Hair was everywhere! It was bad to the point that I needed to sweep, even on vacation! I thought to help the kids (mostly Carter) with the hair loss, we'd do an exercise that they could take part in. I asked them how they felt if they could cut my hair on the last day of our trip. Katherine was excited and couldn't wait. Carter was reluctant and kept saying 'I don't want people to make fun of you!' We worked on it throughout the week.  I knew he was personally struggling with the physical changes. I tried to explain to him, I would still be the same person. I would still love, kiss, hug, and play with him. I also reminded him that this change is temporary and my hair would grow back.  On the last day of our trip, I gave the kids the option. Katherine couldn't wait. She made the first cut. Carter was still reluctant and ran off initially. He finally came around as we were cutting and agreed to one cut. Immediately after the one snip, he ran off and said he was done. Mike helped me fix the haircut to even it out. I went to show Carter but he still wasn't having it. He took the wig and asked me to put it on. When I did, he seemed better.

Carter, mama knows this is a big change. I hope you can finally come around. I love that you care about me and what people may say. I promise you I'll love you the same way with or without hair, buddy! It's just hair and shouldn't define who we are and saddens me that you have already picked up on what is deemed the 'norm' at six! We'll get through this and I hope witnessing what mama is going through will help make you and your sister be braver and have more compassionate for others.

We made it through the holiday weekend without being reminded I had cancer. Early Tuesday morning, on the 5th, I received a call from the hospital. It was Jenn from Dr. Specht's office looking to schedule my surgery. I quickly was reminded of life as a cancer patient. We went ahead and booked the surgery for Monday, September 12. Prior to the surgery, in mid August, I'll be meeting again with Dr. Specht to discuss the details of the surgery. I will also be meeting with a plastic surgeon to talk about reconstructive surgery. Jenn emailed documentations regarding the appointments and guideline about the surgery procedures. With family history, I'm leaning towards an aggressive approach of bilateral mastectomy with reconstructive surgery. We will finalize the plans when we meet with the surgeons.

Since I took a week off from treatment, I had my makeup treatment on Monday, July 11. Dr. Commander is not at MGHW on Mondays so I was scheduled to see her nurse practitioner, Lucy Miller. The blood work and normal procedures went well, as did our appointment with Lucy. We ran into issues as I was in the infusion room waiting for treatment. Since my typical appointments are on Thursdays, the computer had me scheduled for last Thursday. The pharmacy would not release my order without Dr. Commander's authorization. Once again, I was assigned to nurse, Ann, and she helped track down Dr. Commander at MGH in Boston. We waited close to an hour before treatment began. Treatment #7 will go on record as one of the longest treatment but fortunately, it was uneventful!

This week Carter is at a local camp that runs from 9-3. My appointment on Monday was at 8:45. In anticipation of this appointment, we made plans for coverage but found out on Sunday we needed to make alternative plans. Luckily we found friends and neighbors to help with AM drop off and serve as backup for PM pick up. We are reminded in these situations, how incredibly blessed we are to be part of a great community! Special thanks to The Careys and The Walshes for coming to the rescue!! ❤️

I'll be your chemo buddy

I said I wouldn’t blog but here I am. The deal was that if you’re Lynne’s chemo buddy then you have to be a guest blogger…so here goes nothing.

 

When I first heard of the news that Lynne had breast cancer my thought was lightning really does strike twice. We had just gone through this whole ordeal with our other sister, My, not long ago and now it’s happening again to another sister. But it really didn’t take me long to understand that this happened to us because the big guy up there knows we’re a strong family and we’ll get through it and come out even stronger. My second reaction was feeling like it was unfair that it happened to Lynne and not me because I was the one that wanted free boobie implants. Lynne doesn’t care that she’s flat like a pancake! I guess it’s also the big guy’s way of saying that he’s going to take care of the flat pancakes for her if she wasn’t going to do anything about it.  ( . )( . ) J

 

I accompanied Lynne to her 6^th treatment. It was a milestone because it meant she was at the halfway mark and only 6 more treatments to go for the first round. When I saw Lynne, after the hugs and the hellos, the next thing she said was “take these (slap bracelets) home for Alyssa and Dylan” and I knew it was going to be a good day. If you know Lynne, you know she loves free swags. Chemo wasn’t going to get in her way of getting of free swags. Chemo was uneventful and Lynne took it like a champ! Not once did I have to remind her to “relax your body”. Chemo flew by fast probably because I was entertaining the both of us with my shenanigans and entertaining skills. J

 

Surprisingly Lynne had a lot of energy after chemo. I’d like to think it was her chemo buddy’s energetic vibes rubbing off her. She’s usually really tired and wants to go home to rest but today she asked to go to the mall. So off to the Natick mall we went. We spent time shopping at all of our favorite beauty stores. Our first stop was at Mac. Lynne bought foundation and powder for an upcoming trip to Myrtle Beach. Our next stop was Sephora. As soon as we stepped into the store, they had brow powder on display. This was also another sign from the big guy saying she needed to do something with her non-existing brows. I showed her how to apply it and voila…instant makeover! As we were checking out Lynne tells the cashier that she has a “Sophia” reward card. Of course the cashier’s reaction was “what kind of card?” She didn’t have a Sephora reward card but she had a “Sophia” reward card… priceless!

 

After shopping we were hungry so decided to stop at the Cheesecake Factory to get food to go.  As we’re waiting for our food to come out Lynne decides she wants bread to go as well. She approached the waiter and asked if she can have the dark chocolate bread to go. Yeah, I didn’t realize Cheesecake Factory had dark chocolate bread either! What she really meant was the wheat bread. I would like to think it was the chemo brain but no, that has always been Lynne. She has her own vocabulary that only she understands.

 

We get back home and chemo brain kicks in and Lynne forgets the code to the garage door so we’re stuck outside. Making the most of our time we decide to have a romantic lunch on the patio. We put out the nice spread of food from Cheesecake factory and just enjoyed the food and soaked in the beautiful weather. And as we’re sitting there eating, Lynne tells me she’s never sat outside on the patio since they’ve moved in. Spending the day with Lynne made me realize to really enjoy the little things in life.

 

I would like to end by saying a few personal words to my sister, Lynne. I’ve never been good with showing or expressing my feelings but I do hope you know how much I love you (and that goes for all my other siblings). Even with thinning hair and eyebrows, you still look beautiful. When we were growing up, I took the punishments for you and fought your battles and I would gladly take on this cancer for you if I could. But I know you’re strong and fierce and you can face anything that comes your way. Just know it’s not about the cancer. Anything that you’re going through, you’re really battling yourself; you’re not battling the cancer.  It’s all about what you’re willing to put in to overcome the obstacle you’re faced with. It’s about how tough you are mentally to do what you do. Stay physically and mentally strong, sis. I’m here for you always and together we can get through this and kick cancer’s ass again!

 

Cheers to the best chemo buddy there is (that’s me!)! J