Half way through the first treatment plan!!!

Wahooo....we made it half way through the first treatment plan! I'm estastc! 6 down...6 more to go!! My older sister, Van, (the kids call her HaiHai--Di Hai means oldest aunt but since Carter couldn't say Di he nicknamed her HaiHai. The name stuck like how the kids refer to My as MyMy instead of Di My) was my chemo buddy today. She took the day off and insisted on coming with me. She's a hoot! Earlier in the morning, she sent texts of all her food stash for the day. I reminded her it was a shorter infusion day but that didn't change what she packed! Mind you, all that she packed was for herself since I'm offered lunch and snacks during treatment. One of the most random benefits of going in for treatments, one that is still very foreign to me!

I was assigned to infusion room 16 with nurse Ann again! Ann joked and told me I was behaving so didn't need to be directly in front of the nurses station this week. 😊 As we were settling in the infusion room, Van decided it was a good time to start exercising! She was doing squats, lunges, etc. Since she had to accompany me early, she didn't get her exercise routine in. It was quite funny and entertaining! We laughed so hard that I seriously that Van might get kicked out!! Thanks for the laughs and fun today big sis! Let's see if I need to be reassigned to a room in front of the nurses station next week. 😜

The nurse assignment is random so the patients and nurses get to know everyone but I truly have been so lucky to have been paired with Nurse Ann 3 out of my 6 treatments so far. Ann is an awesome nurse and has been my advocate during this treatment plan. She's truly awesome at her job--she comes in early to review her cases, she's personal, kind, has so much empathy. She's checks on me constantly and offers snacks, beverages and warm blankets. She knows what works for me and conveys this with Dr. Commander. She shared she knows the feeling of Bendryl so the delivery of it makes a big difference. The pharmacy had to special order small bags for me since I need the medication slow dripped as opposed to pushing it through an IV.  Although this extends the appointments, we know it works without side effects.

The treatment was exhausting and I faded a bit but didn't fall asleep. I had a decent night sleep the day prior and I think that really helped. The day shaped out to be a good day! Dare I say it...best treatment session so far! I was tired but powered through and managed to also run some quick errands and have some fun with Van before logging to work after the treatment. Will happily take these treatment days again!

It's a bit coincidental that we booked a trip roughly a year ago and this treatment marks my halfway point in this first round of chemo treatment. I'll take it as a victory sign and a celebratory trip! We are heading to Mrytle Beach tomorrow. I have mixed feelings about the trip. Upon the diagnosis, I was worried I wouldn't be able to go. My doctor originally said we would have to come back in time for my weekly treatments. As the weeks progressed, she said I was responding well and received the green light to go without any modifications to our original travel plans. I'm happy I was given the medical approval to go and have a week off of treatment but am also sad to think I may weigh down the family's fun and activities. I can't be out in the sun for an extended period of time and my energy level is limited. I had tried to convince Mike to take the kids without me but that wasn't happening. I will do my best to enjoy this time away with my little family and forget that I have cancer for at least a week!

A good week!

Hopefully I'm not jinxing it but it has been an uneventful week between treatments.  I had a great week! Best week so far!! As the school year wraps up, so does some of the kids' activities. We'll miss soccer, tball and ballet, but also look forward to the summertime freedom!

The hardest part about this treatment plan so far is not knowing how I feel on a daily basis. I am also not able to spend extended time in the sun so it really limits all the summer activities that we typically enjoy during the summer months. It has been hard making concrete plans with family and friends. I'm very much a planner so I have quickly learned to adapt to going with the flow. I still struggle with it from time to time but learning and getting better.

This is Carter's first summer attending summer camp so we went to visit the camping ground where he will be spending the bulk of his summer weeks. I still clearly remember in January when the summer camp registration opened up, I was mapping out and planning his summer weeks. This summer is not shaping out to the summer I had planned but we'll get through it. We'll make it up next summer! 😊

Lately I noticed I feel especially angry. I don't know how to describe it other than I transform to Hulk! I want to destroy things--although never done but I so want to flip over tables and chairs! I think I have a case of roid rage but since I'm not typically an angry person, it is somewhat comical!  It  is especially funny when I tell people I'm going to destroy them or mess them up. People generally just look at me and laugh! I guess it is to be expected since I'm not all too threatening. Luckily the roid rage is rather temporary. I may have to pick up lifting, if it worsens. 😜

5 down!

I signed up to be Lynne's chemo buddy today. Admittedly, I had some anxiety returning to the infusion rooms. Ya'll know that distinct hospital smell...that strong disinfectant stench that follows you for hours even after leaving the hospital. But, whatever nervousness I had faded as soon as I saw Lynne in good spirits. She's had a tough go with the first couple of rounds so if she was feeling happy, I knew that I'd be fine, too.

Today was the completion of round 5! Almost at the half-way mark for this phase of treatment! We occupied our time by taking crazy and funny selfies and as is typical with the Doan siblings, we exchanged texts with life updates. Lynne was feeling tired from the medication so I turned down the bright hospital lights and encouraged her to sleep. She was in and out because she was afraid that if she fell into a deep sleep, she would wake up with a new mustache or more defined eyebrows from yours truly! But, I was on my best behavior.

As soon as we got home, she fell asleep on the couch. She would sporadically wake up and as is typical with Lynne, she worried that I would get stuck in traffic and encouraged me to go home/tried to kick me out. I couldn't and didn't want to leave her by herself so I sat there and watched her sleep. I woke up very early that morning and was tired myself, but for some reason, I just couldn't fall asleep and found peace just sitting there next to her on the couch and seeing the rise and fall of each breath.

Carter and Katherine were both surprised and excited to see me after school, but I had unintentionally ruffled their feathers. I knew Carter didn't have school on Friday so I invited him to sleep over tonight but that really upset Katherine. She felt excluded and I could see she was trying to hold her feelings inside but ended up letting her frustrations out by ripping a card that Carter had made for her with a lot of hearts on it. Carter saw her rip up the card and was so upset because he had just made her the card that day. Both kids' feelings were hurt and I immediately felt guilty because I could have handled it differently. After calming them both down, we talked and everyone hugged and it was as if the crying never happened. The resiliency of kids...

Lynne's neighbors have been so awesome and supportive. A taco dinner was dropped off and it came with a goodie bag for both the kids. I was reminded of all the good in the world. I know Lynne isn't used to this kind of help and the kids are wondering why they are getting special treats every week. So a genuine and very special thank you goes out to the neighbors who are showering my sister and her family with so much love and support!

After dinner, I took Carter and Katherine to their favorite froyo place for dessert. Just the three of us. We piled on the toppings and took more silly selfies. The topic of mama's hair came up and Katherine seemed to be fine with Lynne's hair loss. "It'll just grow back, right MyMy?" Says Katherine in her sweet angelic voice. "Right baby! It'll grow back". Carter on the other hand expressed anger. "I don't want mama to lose her hair. She doesn't look the same!" So we talked about the medicine working but he turned his face away and sat quietly. "Maybe people will not be nice to mama if she loses her hair and people will laugh at her." So I asked him how that made him feel and his response, "Mad." He asked me if there was truth to the story about Alyssa defending and comforting me when I didn't have any hair 6 years ago. He asked me what my hair looked like before it started to fall out and he asked if it grew back the same or if it was curly. I answered him honestly and he said "ugh, I don't like curly hair!" So I reminded him that everyone is different so mama's hair may just grow back just the way that it was before. I don't think I totally convinced him but I saw that big noggin of his spinning and processing.

I was glad to have been there for Lynne today. It sucks to be down this path again and as hard as it is for me personally, my love for Lynne motivates me to be there for her every step of the way. We are almost there sis!

A month since the diagnosis

It has been a month since the diagnosis. There are times when it all seems surreal still. Unfortunately the physical changes are beginning to be more apparent and I'm starting to look 'sick.' My hair is thinning to the point that my scalp is nearly bald. At the last doctor's appointment, Dr. Commander said patients at this stage typically consider shaving off their hair. As much as I say I'm ok with losing my hair, I'm hoping it will stay a little while longer so have not done the deed of shaving it off. I'm struggling with the hair because I feel the kids may still not be ready for the physical changes but then who really is?! I know it has to happen soon. For now, I'm wearing baseball caps and bandanas to cover the top of my head.

I'm still struggling with sleep so I constantly feel and look tired. The doctor prescribed medication to help but I'm anti-medicine unless I absolutely have to. I'm scared to become addicted to or dependent on medications. I may have to resort to taking it once a week for a good night sleep. I'm a Doan--Sleep is our super power! I miss my days of being able to sleep anywhere. Unfortunately these days, at best, I get 4 hours of sleep.

My appetite has been stable since my weight has been consistent.  Sometimes I feel pretty hungry but unfortunately nothing seems to have any flavor or taste. I often have a metallic taste in my mouth. I have talked to a nutritionist and what I'm experiencing are all common. A lot of my symptoms are very similar to being  pregnant. I have a very heighten sense, taste and smell. There are times when smells bother me. What I like one day, may not be the same the next day.

I have good and bad days but would have to say there have been more good than bad days. I try as best as I can to keep my spirits high. There are times when I forget I am sick. I'm thankful for so much. I'm happy that I have responded fairly well to treatments. Treatment days are hard but I'm functional. On shorter infusion days, I am occasionally able to work for a few hours. It's all the basic things that I'm grateful for and am happy about-- I can still get up, shower, work, spend time and take care of the kids, take them to swim, karate, ballet, tball, etc. I know there will come a point in this treatment plan when I'm unable to do these things so for now I am doing the best I can to maintain my 'normal' life as possible.

We went to York, ME this weekend. It was a fun trip to celebrate Father's Day with the extended family. The kids had a blast with their cousins. I was exhausted at times but was very happy to have been able to make the trip. While walking back from the beach, I felt tingly and numbness sensations  in my finger tips. This is a known side effect. I just hasn't experienced it. It's a very strange feeling. After feeling such, I was afraid to carry my 4 month old niece, Lia. It often amazes me that 4 treatments in and things are starting to look differently.

Serving Up the Second Course

As I'm writing this post, Lynne is laying in bed snowed under from the Benedryl she received with her 4th chemo treatment. I wasn't planning on writing this post but as I'm sitting in front of the TV tonight with her phone beside me, I'm a bit overwhelmed by the number of text messages that she receives from family, neighbors, friends, co-workers, parents of our kids' classmates, teachers and everyone else that's rallied around her to provide support and just to check in. We really have an amazing support system around us and I can't thank everyone enough. Your outreach inspired me to put down my beer, get off my duff and write this post to provide everyone an update.

The morning starting off with lots of nerves. Lynne was hopeful that, after last week, her treatment team had dialed in on the right pre-treatment dosages. At the same time her reaction to the Herceptin from the first week was definitely lingering in the back of her mind.

We arrived at MGH West a little before 9AM for her lab and since this was the first day of her second course of chemotherapy, we met with her medical oncologist, Dr. Comander. A number of positive things came out of this meeting. First, when Lynne told her  doctor that she's been unable to locate her lump since after her second treatment, Dr. Comander confirmed that both her tumor and swollen lymph node were no longer detectable through a manual exam. Dr. Comander was pleasantly surprised and told us that the majority of her patients don't show this type of progress until after the start of their second course of chemo. The second, more humorous, discovery was that Lynne has been applying the wrong medication to her port before each chemo treatment. Dr. Comander had prescribed both a hydrocortizone cream for a rash that Lynne had developed as well as topical anesthetic to help numb the pain of the needle insertion into her port. On a positive note, we're hopeful that subsequent needle insertions will be less painful with the application of the correct medicine! The third, more anecdotal thing, that we learned was one of Dr. Comander's colleagues has a theory that most patients who have a Herceptin reaction are having a tumor reaction to the medication. Her theory is that the reaction is a good sign that the Herceptin is affecting the tumor. We can now add Lynne as an additional data point to support her colleague's hypothesis. The fourth thing we learned was that it's very rare for patients to have a second reaction to the Hercpetin. Lastly, we came to the realization that when you've surrendered to having to spend the entire day at a hospital you're not at all impatient about the doctor being late for your appointment! Not a bad start by my standards!

I'm happy to report that today's chemo treatment went as well as any chemo treatment can go. For starters, nurse Anne (from her first treatment) was assigned to her care. Anne is not only compassionate and kind but is very knowledgeable about the treatment and protocols of Lynne's treatment. The treatment team did up her dosage of Benedryl over what was administered last week though as the start of every course of chemo involves three infusions. Since she had a reaction to the Herceptin during her first week, her treatment team decided they would split the difference in dosage for the Benedryl just to be safe and landed on 37.5mL dripped through the IV over 30 minutes. Since she didn't have a reaction to the Herceptin  this week, she'll be receiving 25mL during her Taxol only treatments and 37.5mL at the start of each course.

Her port was flushed and disconnected at about 3:30 and we were in the car around 3:45 today. That included a 30 minute monitoring period after her Hereptin infusion, before the Taxol. We're hopeful that the remaining two courses will start just as well!

One other funny thing that came out of the day today was I told Dr. Comander about something Katherine said during dramatic play with Carter. While they were playing one day I overheard her say to Carter "you have no hair, that means you have cancer". Now, we were warned by the director at her center that this might come out during dramatic play but it still caught me by surprise since it was the first time I ever heard Katherine even talk about the cancer. Dr. Comander thought it was cute and shared with us that one of her patients is a piano teacher. One day her patient observed 4 of her students sitting on a piano bench completely still and quiet. When she asked the students what they were doing, they said they were waiting in a hospital waiting room. I'm glad to see Dr. Comander can joke about her own profession.

Why Me?!

As a cancer patient, you prepare yourself as much as you can for the physical changes. Each week going in for treatment, I see people of all ages and at different stages in the treatment process. Cancer to some extent becomes this club. You share this instant bond as you are all fighting to win the battle.

As much as I was prepared to lose my hair, I wasn't prepared to see it coming out at an alarming rate and this early in the long journey.  It is especially hard to wake up and see piles of loose hair on my pillow--I'm not talking strains, I'm talking handful! Throughout the day, I would continue to lose hair. Hair was everywhere!!  Luckily I have thick hair but wonder how long before I lose it all.

Kinda gross but collected hair loss in the bathroom simply on Sunday!

On the first day, the hoarder in me, collected a pile just to see how much hair there really was.  Carter saw the pile and got really upset.  He said 'I don't want to see any more hair falling out of your head!'  I tried to comfort him while trying to control my very own feelings. I tried to explain to him the medicine that's helping mama get better will make my hair fall out.  We then know the medicine is working. He wasn't having it. I know Carter will be my toughest during this journey. He's old enough to understand. He is also my sensitive little guy. My heart breaks for him and Katherine but know they will grow to be stronger, more resilient and compassionate for others.  I may not see it now but I know it will happen.  My family often reminds me of this.

I was feeling pretty frustrated over the weekend. I'm mad that I run out of energy so fast and on very basic things.  Simple things that I use to fly through takes me forever. It takes all my might to change the sheets and make the bed. I have to rest to recharge. While resting, I become angry! I can hear the kids and Mike playing in the background. I'm sad to be missing out on all the fun. Life seems too cruel at these moments but try to remind myself this is all temporary.  Just wish this temporary can be expedited somehow and someway....

It is Tuesday and I made it into the office again today. While at work, the light in the bathroom revealed something I wasn't quite ready to see. I know I have been losing hair. I just didn't realize where. I noticed the top part of my head was beginning to thin out--to the point I'm able to see my scalp! This was the first time that it sunk in that I'm really about to lose my hair!  I'll continue to hold on as long as I can.

I received a call tonight from the genetic counselor at NWH with results. She indicated that all 29 genetics tests came back negative. They retested the BRA2 gene at a different location, since I previously tested at BIDH, and it was confirmed negative for a second time.

This all being said, the strain of cancer I have may be something that hasn't been discovered or it could just be environmental. This makes cancer this much scarier because no one is safe!  A lot of cancers do not have connections to genetics but with family history, I was convinced somehow it had to be genetically related.

I think selfishly I was really hoping the genetic testing results would give me some answers. Instead it leaves me further confused. Mike helped comfort me by saying he's happy it's not genetic related since my parents have already been through so much already. As much as I try, I know my parents are blaming themselves.  Now there is scientific evidence that the cancer I have is not a known genetic mutation, it can't be linked to them. I just can't help it wonder why me??!

#3 down!!

Round #3 has been the most emotional one so far.  I sat in the waiting room full of nerves. I was scared!  I kept looking down at my 'No One FIGHTS Alone!' pink bracelet which reminded me of all the support behind me.  Here is a pic of Mike and me sporting the bracelets.  Thanks Mary!!

I'm thankful for and humbled by the amazing support system around me.  My phone was blowing up with encouraging messages.  With each message, my confidence grew but the tears started to roll.  This journey has been an emotional roller coaster but I'm often reminded of how lucky I am to have all these incredible people in my life.

Chemo #3 went well!! Could have just been a coincidence but I was assigned to infusion room number 14 which just happens to be right outside the nurses' station.  Mike and I joked with my nurses, Diane and  Anne (from the first treatment) that I was trouble and needed to be in their direct view.  I learned that they refer to me as the 'shaking girl!'  We all had a good laugh.

Based on my reaction to the Benadryl last week, the decision was made to reduce my dosage from 50ml to 25ml and slow drip it over 20 mins.  I definitely felt the medication -- it made me sleepy and a bit groggy. But, I'll take this reaction over what I experienced last week.  This treatment was by far the quickest and most uneventful.  I'm ecstatic and remain hopeful.  Since the diagnosis, the four letters H-O-P-E have provided me with a lot of comfort to make it through this journey.

This week, I have started noticing a lot of hair loss. I was warned about this and knew it was inevitable, I just didn't realize it would happen so soon. On my ride home from telling my parents a few weeks ago, Carter actually brought up this very topic.  I remember him asking..."mama, what is it that you have again?  Are you going to lose your hair like MyMy?"  We have pictures of Carter and my sister when he was a baby so he knows she lost her hair during her cancer treatment.

Carter goes back and forth on being ok with this.  Sometimes he will say things like "It's ok, mama...it will grow back!"  Other times, he gets mad and says "NO, I don't want you to lose your hair!" I try to explain to him that if I lose my hair that it will grow back kind of like him losing his teeth.  He seems to be ok with this answer, for now anyways.  Katherine is obsessed with the Disney princess, Rapuzel, so has said she wishes I can get hair like Rapuzel! I know once the kids see the physical changes, it will get a lot harder.    

Mike and I went wig shopping in preparation for this after my last treatment.  My suggested I check out Windows of Hope at Beth Isreal.  The sales ladies were so incredibly nice, compassionate, helpful and just a joy.  I tried on a bunch of wigs but I'm pretty plain Jane and wanted something  easy to maintain and most resembled my natural hair. The sales lady, Linda, was worried that the wig I picked would be too hot for me during the summer months so suggested I look into a halo wig.  Halo wigs only cover the back and sides of the head so I'd have to wear a hat or a bandanna to cover the top.  It was really hard to envision myself without hair so I told her I would consider it and come back.  Linda knew I was struggling with the idea of losing my hair and after a long day of treatment, she insisted I get it. She was so insistent that she just gave it to me!  She said this was a gift for the kids.  I was incredibly touched.

We got home from the hospital today to yet another awesome surprise from our incredible neighbor, Christina.  She checks on me frequently and pops by to drop off things for me and the kids regularly.  She's a sweetheart and we are so lucky to have her and her family in our lives.  This week, she prepared for us a delicious dinner of chicken lettuce wraps.  She's thoughtful to the point of including a detailed list of ingredients (because of Carter's food allergies) and activities kits for the kids!  We love you Miss Christina!  

       

So many feelings and emotions this week. I returned to work for the first time in nearly 2 weeks. I have been working as much as I can remotely but I was craving some semblance of normalcy so went in on Tuesday.  I must be 'sick' since I was excited to be going to work.  This was the first week in a long time without doctor's appointments other than my weekly scheduled treatment on Thursdays.  I was looking forward to setting a routine with my new reality.

I had a great first day back.  Everyone was super supportive, kind and pulling for me! At times, I even felt like a rock star.  😉  Folks, including our CEO and CIO, stopped by to show their support and cheer me on.  A colleague and good friend, Mary, brought in buttons and pink bracelets that read 'No One FIGHTS Alone!'  I was definitely feeling the love.  As the day progressed, I started running out of energy. The low energy level is a big adjustment since I don't look and feel sick but once the energy is zapped, I'm exhausted!  The highlight of my first day back was I took a lunch break!  For those who know me, I almost never break for lunch.  Mary and I sneaked out for a fun IHop lunch.  I don't think I've been to an IHop in nearly a decade, if not longer!

Cancer really is a strange thing!  The more you talk about it, people know the word cancer but some really don't understand the disease or journey (nor would I expect them to if they haven't been affected).  What surprises me most is how many people's lives have been touched by cancer.  I have been introduced to survivors and have heard so many incredible inspiring stories.  It's amazing how far research has come, especially in the realm of breast cancer.

There are moments still that I feel like this is all a bad dream.  For the very first time in my life, I have been looking for a fast forward button.  I'll even settle for the Staple's easy button!  The toughest time of the day is at night.  I lay awake and the tears start to flow.  I'm mostly angry and my brain can not shut down. The discomfort of the port is also a constant reminder.  To be honest, the port makes me feel like an alien!  It's just this strange object that sticks out underneath my skin.  I'm still waiting for the day that it will help me.  For now, it is a constant reminder of the pain, journey so far and what lies ahead.  

Since the diagnosis, I feel like I walk around with a different set of lenses on.  I look at people and things differently--everyone has a story.  I wish there was a way to convey the message of having compassion for others as you don't know what their story is...

It is Wednesday night and the nerves are starting to set for treatment tomorrow morning.  I just need one good treatment under my belt to boost my confidence.  I can handle pain but these reactions are all too scary.  Each time I have them, I feel like I may die.  I'm probably being overly dramatic but it is scary to not have control over your body.

Lessons from a Day with Lynne

“My sister has breast cancer.”

“No, not that one. Her older sister, Lynne.”

Despite saying the phrases above a countless number of times during the past two weeks, I’m not sure that it’s fully sunken in.

When My was diagnosed with breast cancer about seven years ago, I was just finishing my time at Holy Cross and getting ready to start grad school at the University of Vermont. While I knew that My was a champ through her entire battle, it was difficult to witness it and support her from a distance. There were those big moments in her journey that I wanted to make it a point to be at – her first chemo treatment, her surgeries, her last chemo treatment. Now that I’m much closer to family, there wasn’t a question about being there physically, by Lynne’s side, from day one.

Given my lighter summer work schedule, I was happy to be able to hang out with Lynne for her pre-treatment appointments at MGH. It was an excuse to not be in the office and we got to grab lunch at Lynne’s favorite Thai restaurant while she worked down the street in Boston. During my time with Lynne, while I was by her side and while I waited for her in the waiting rooms, I reflected on a few lessons that she was teaching me throughout the day.

Life doesn’t have to be so planned and scripted.

“It’s really taught me that I don’t need to plan out every moment of my days and weeks”, Lynne shared with me as we had lunch on the MGH Museum roof deck. One thing that Lynne and I share in common is that we over-plan life. We’re those people who look so far ahead that it annoys our partners because we forget to live in the moment. Lynne looks for Slick Deals for vacations five summers in advance. With two amazing, smart, young kids by her side, it’s a nice reminder to slow down and to enjoy the moments in front of us – we can write the life story as it’s happening.

Good people make shitty situations better.

Doans deal with everything together. We’re sympathetic to each others common cold and stomachaches and by each other sides in hospital beds. We know that we’re truly lucky to have that type of family. What has been even nicer to see is Lynne’s home community in Natick is rallying behind her, Mike, and the kids, and reminding them “we’re all in this together.” During my time with Lynne, neighbors reached out for updates and to check in, someone stopped by with flowers, and others prepared full meals for them. I’m so happy that she has the community that she does surrounding them.

You can conquer anything that you set your mind to.

Barium sulfate is described as a “chalky liquid”, “a very thick milk”, and “often considered the worst part of a CT scan”. After realizing that she had one more appointment at MGH despite thinking her day there was done, Lynne received the instructions from the radiology tech – “one [bottle] is good, one and a half is even better, two is great.” With those instructions, she looked at the two bottles with a strong sense of determination. Each sip resulted in a gag where I was prepared to catch some of her yack in a cup. Many “I can’t do this” proclamations turned into her yelling at me to not throw her empty bottle away because she “wanted to save it and needed to show the tech proof that she drank it.” For those of you who know Lynne, none of this should surprise you. She did what she set her mind to…and continues her hoarding habits, despite her diagnosis.

Lynne, you’ve taught me more than you could probably ever remember in my 29 years of life. I have no doubt that you will continue to teach me so much more through this journey. I, and everyone else, am here for you, Mike, Carter, and Katherine whenever you need – even when you may not know you need it.

Live in the moment. You’ve got good people around you. You’ll get through this.

 

2nd chemo treatment

I thought since I was only getting one infusion this week, it shouldn't be so hard.  Boy, was I wrong! My second round of chemo was tough.  We were at the hospital from 9:00-2:00.  I was still very much sore from the port surgery.  This was the first time, I'd be using the port to draw blood and for treatment.  Since the port placement was very recent, the wound wasn't fully healed.  I was simply in a lot of pain.

I was assigned to infusion room number 5 this week.  I was settling in and Nova, the hospital social worker, came by to talk to us.  She had popped in last week but I wasn't in any shape to talk to her.  She wanted to come by early and talk before the medication kicked in.  She wanted to know a little bit about our family, our support system, how we were coping with things, etc. 

While we were conversing, nurse Gail, was preparing for my treatment.  I reminded her of my reaction from last week.  She was aware and was going forward with giving me pre-medicine before treatment.  I was given my steroid medicine orally.  The Benadryl and Pepcid were administered through the IV.  During the last push of the Benadryl, I felt a huge rush and had to gasp for air. There was a tickle in the back of my throat and I did not feeling well.  I started having similar symptoms but milder than the week before  I started feeling cold and had a very hard time focusing.  I was not able to talk without slurring and my heart rate spiked.  Other nurses came running in and everyone was monitoring me.  Nova was asking me to do deep breathing techniques to help with the heart rate as they were trying to figure out what was going on.  They suspect that the dosage of Benadryl (50ml) was too much for me.  Next week's plan is to slow drip the Benadryl through my IV. They will look into reducing the Benadryl dosage later but for now we need to keep the dosage since I had a reaction to the Hercepton.

Since this second treatment, my head has been in a fog.  I'm physically here but mentally I'm somewhere in outer space.  The feeling comes and goes.  I've been told I have chemo brain!  :(  It is the most bizarre feeling and very difficult to explain because it happens sporadically. On the plus side, I have not been able to feel the lump!  It has been a tough two weeks of treatment but if I'm able to feel the positive effect, perhaps it will all work out!  I remain hopeful!

Chemo day was tough but the day after the treatment, I felt surprisingly ok. I had this extra boost of energy.  My sister warned me to take it easy and not to overdo it because I'll have a false sense of energy.  I couldn't help it and took complete advantage of the energy. We had an action packed Memorial Day weekend with plans to see family and friends.  I didn't feel "sick" and didn't want stupid cancer to get in the way of our plans.  I quickly learned I did not have the same energy level and had to pace myself. Towards the end of the weekend, I was wiped out!

The week ahead was a busy one with a biopsy to place a clip/marker in the infected lymph node and the placement of a port on Tuesday and chemo on Thursday. As the long holiday weekend wrapped up, I got more nervous. I wasn't so much scared about the biopsy as I had a similar procedure done before.  I just wished they placed the clip/marker when they originally tested the lymph node. I was scared about the port placement. The port is a device that allows the nurses to draw blood and administer chemo without having to access my veins each time. Numerous people have told me the port is the way to go. I just wasn't convinced since it was an invasive procedure and I have never had surgery before!

The procedures on Tuesday went well. I was sore and for the first time, I felt sick!  After the procedure, I was in a fog and it took me a bit to recover from the sedation medication.  I didn't have the strength to change back into my regular clothes and asked the nurse if I could just leave with what I had on. She was kind enough to help me change into a clean johnie and sent us on our way. 

As I was being discharged, we received a call from Katherine's school. Katherine had a fever and we needed to go get her. It has been a tough stretch for the Caos.  Katherine has had a fever off and on for nearly 2 weeks.  She had a physical on Monday, the 23rd, and had started showing signs of not feeling well.  We returned to her doctor on Friday, the 27th since her fever spiked again and we wanted her to be seen before the long weekend. 

I called her doctor's office on our way to get her and they wanted to see her.  We picked her up and since I had a johnie on I sat in the car and waited.  Mike took her in and for the next 15 mins, it felt like an eternity.  It is the absolute worse feeling when your child is sick and you are helpless.  Mike came out and said her symptoms were different from the last visit so her doctor thinks she may have caught something else.  We were given lab orders to take to the hospital in case her fever spiked again.  In the back of my mind, I kept praying that it is just a bug and nothing worse.  We were struggling as is and to have another patient would have been too much.  

Katherine and I laid low on Wednesday.  I was still sore from the procedures.  Luckily Katherine started to perk up and we were able to send her back to school on Thursday, chemo day!

First chemo treatment

I hate needles! I have undergone so many tests and been poked and prodded in areas that I didn't even know existed!  I had my first chemo treatment on Thursday, May 26th.  It was a tough day. I was at the hospital from 9:00-5:30.  Mike took me and was later surprised by a visit from my brother, Jimmy. Guess he didn't have enough of me since we spent the entire day prior at MGH running lab work and scans. Love you little bro!

Jimmy presented me with a goodie bag.  The content of the goodie bag made me laugh! He added sticky notes on miscellaneous items such as body soap with a message of 'use this daily!' and a foot brush and a note of  'you need a pedicure!' Despite his twisted humor, it was memorable and made us all laugh including the nurses.

Could have been a coincidence or a sign but I was assigned to infusion room #9. Number 9 has always been Carter's favorite number. During the infusion, I'd often look up and thought it was a sign that he was thinking of me.

My chemo treatment pre-surgery plan is 12 weeks long.  Every four weeks, I will have all 3 infusion drugs (Taxol, Hercepton and Pertuzumab). The weeks in between, I'll have one infusion of Taxol. At my first treatment, two third into the Hercepton loading dose, I felt extremely cold and started shaking uncontrollably.  Everything happened so fast. I remember telling Mike to go get nurse Anne. Upon his return, I was shaking to the point, I was moving the chair. I could not stop.  I could not speak without slurring, I had a very hard focusing and went from being extremely cold to being hot. I cried but it wasn't because I was sad. I was angry and had no control over my body. They stopped the treatment and gave me a medicine to stop my shaking.  Unfortunately that medicine made me feel sick and I started to vomit.  I was so scared they would have to stop treatment all together. We now have a new plan that involves pre-medicating me before chemo. Because they had to monitor me closely, the first session took longer than expected.  I'm hopeful that subsequent treatments will go smoother and quicker. I was told only 15% of patients have a reaction to Hercepton.

Meeting with the medical team

On May 24th, we had an appointment to meet with a breast surgeon to talk about my diagnosis and a treatment plan. I was anxious but eager to find out additional information and to get started. My sister, My, met up with Mike, Katherine (who was home sick from school) and me at NWH. We met with Dr. Specht who practices at both NWH and MGH.

Dr. Specht talked about the diagnosis, next steps and the proposed treatment plan in addition to a clinical trial. My was in charge of taking notes. Here is a summary of her notes:  the tumor is 17mm in mass on the left breast. It is HER 2 positive, estrogen positive and HER 2 new receptor.  The lymph node also tested positive.  Next steps included a MRI breast, a CT scan, a Bone Scan, lab work, an Echo (ultrasound of heart) and an installation of port. The treatment plan will consist of once a week chemo for 12 weeks, surgery, additional chemo once every 2 weeks for 8 weeks, and then radiation daily for 6 weeks.

Mike and I decided it was best for me to receive care at MGH as we liked the team approach of the surgeon, medical oncologist and radiation oncologist. Dr. Specht was kind enough to help us arrange a meeting w/ Dr. Comander that afternoon.  We met w/ Dr. Comander with Katherine in tow.  She was kind and understanding.  We were told I really needed to connect w/ the medical oncologist doctor as she will be the one person I would be visiting with most frequently.  She would be my advocate throughout the treatment.

Similar to Dr. Specht's appointment, we reviewed my diagnosis, next steps and my treatment plan.  I really pushed to get started as soon as possible as I didn't want to wait any longer.  The worst part of this journey so far has been the waiting game.  Dr. Comander made arrangements for me to have a bone scan, a CT scan and a Echo the following day at MGH.  Everything was happening so fast that I didn't have time to worry. Dr. Comander divides her time between the satellite office on Tuesdays and Thursdays.  I was told if I was able to complete all the lab and scans prior to Thursday, I could start chemo on Thursday, May 26th.  I committed to this but honestly did not know what it all meant.

Telling the kids and parents

It has been two weeks since the diagnosis and what a whirl wind the past two weeks have been!  I have gone through so many emotions.  I have cried, I have laughed, I am angry, I am determined to fight and win!  I'm touched and humbled by the outreach and support of family, friends, and colleagues.  We are truly blessed to be surrounded by so many incredible people.    

Just as I thought... things are getting easier with the kids getting older and a bit more self sufficient, life got a lot harder! Carter, who recently turned 6, is wrapping up his kindergarten year and is looking forward to the summer months.  Katherine recently turned 4 and started Pre-K.  She's loving life as one of the bigger kids at school.  We were so looking forward to the summer months but this summer will surely be the one I want to forget!

We made the decision to share the diagnosis with the kids.  Carter had already started picking up on something being different as he was questioning why I have been going to the doctor so often.  We wanted to address his concerns sooner rather than later.  Before speaking to the kids, we reached out to their teachers and parents of close school friends to share the news and our plan.  I felt incredibly guilty for potentially introducing the word cancer into the children's vocabulary at such a young age.

We were honest and transparent with them about what was going on.  We told them I have cancer and avoided the use of the word sick.  We felt the word sick is so broad and they may associate it with something that's contagious and that they may catch.  We told them "Our bodies are made up of cells and that these cells do a lot of different, really great things in our bodies.  Some of the cells in mommy's body just forgot their job and are doing things that they aren't suppose to be doing and the doctor's are going to help mommy get better."  Carter was visibly upset and attached himself to my side.  He asked questions about how I was feeling, how long it will take for me to get better, etc.  Katherine knew something was wrong and said she was sad. My heart breaks for them but know because of them, I will fight that much harder.

We shared the news with our parents.  Mike waited until we had a treatment plan in place before sharing the news with his parents. It took a bit of coordination with my siblings to share the news with my parents. We wanted to do it in person and ensure to them that I would be ok.  It was especially hard to tell my parents as they lived through this journey with my younger sister, My, roughly 7 years ago.  Because of language barriers, it was hard to articulate to them that what I have is not quite the same as what my sister had.  My is a BRA2 carrier.  I am not a BRA2 carrier.  My mom kept holding onto hope that what I discovered was benign.  My dad was upset and sad.  It will not be an easy journey but I am determined to fight and win this battle.  I have to!

May 17th - A date that I've celebrated for the last 6 years (it's my remission anniversary date) and now it's become a date that will haunt my second oldest sister, Lynne for the rest of her life. I can not begin to tell you the emotions that consumed my body when I saw the text from my brother-in-law with the words, "it's positive. She's still in shock and hanging in there, but isn't feeling up for company tonight." I immediately picked up my phone and called Lynne and reassured her that we'd get through it together and that I was on my way. She replied, "I'm OK. We have to go pick up the kids now and I don't really feel up for visitors." My response, "I'm not a visitor. I'm your sister and I'm coming over whether you like it or not." :) 

That night, I joined the family for what turned out to be a really funny dinner. Carter and Katherine made us laugh until our belly ached and rice pellets shot out of our noses. Don't be fooled by Katherine's tiny stature because not only does she share in her father's good looks and temperament, but she also "toots" like her "gassy daddy".

After a bath and bedtime stories, I kissed them goodnight and caught up with Mike and Lynne on the day's events. We didn't have a lot of information - we just knew that it was an invasive type of cancer and surgery was likely. I made light of the situation and encouraged her to do the mastectomy with reconstruction so she could upgrade and get new tatas. Turn lemons into canteloupes! ( o ) ( o )

Lynne - Be mad. Be pissed. Be sad. You can even feel sorry for yourself but don't stay there. Be whatever you want to be to get you through the next couple of months. But what I never want you to be or feel is alone. I'm here for you sister. We are all here for you and will make sure you're celebrating your 50th remission anniversary date one day. As Carter would say, "love you to the moon and back 60000 times!" 

Someday, this time will be memories...

Since the discovery of the lump, in the pit of my stomach, I knew something was wrong. Leading up to the first doctor's visit, I kept hoping that the lump would somehow just disappear. Unfortunately it did not.

At my initial doctor's visit, that bad feeling simply grew. My primary care physician, Dr. Anderson, felt the lump and the look on her face told me something was wrong.  She is a breast cancer survivor.  She walked me out to the front desk and asked her staff to book me a mammogram ASAP! She also gave me her personal email address.  I didn't deserve this special treatment, nor did I want it!  I desperately was grasping at any and all hope but it was looking dimmer and dimmer since, in the back of my mind, I had family history of this awful disease. 

The follow-up mammograms and biopsies didn't help the negative feelings. At the ultrasound/biopsy appointment, they took a sample of the lump and then I had to get an additional mammogram since they placed a clip/marker in the lump.  When they took the second set of mammograms, the images showed something was wrong w/ a lymph node.  The radiologist, Dr. Foley, requested that I go back in for an ultrasound and a biopsy of the lymph node.
 
When the doctor's office called the following day and asked me to come in...I knew the results were going to be not good.  When I had my biopsies the previous day, radiologist told me I could hear as quick as the following day and she would call me or may consult my doctor.  I knew hearing from the doctor directly wasn't good! 

When Dr. Anderson came in and said 'you have breast cancer,' I heard words but nothing was registering.  I wasn't scared for myself.  All I kept thinking about was the kids.  My heart was bursting of sadness for Carter and Katherine.  All I want to do is protect them from the pain, confusion and fear.  They shouldn't have to know the word cancer at 6 and 4! 

I vaguely remember texting my siblings and a group of my closest college girlfriends on our drive home.  I must have been in a state of shock since a lot of the events that follow escape me.  I do not remember the conversation I had w/ my sister, My, about coming over.  I don't remember much of the days after the diagnosis.  I was alive but not really living.

Since my sister's diagnosis, I have had a mammogram every 6 months.  My last mammogram was in October.  How could something grow inside of me so quickly without my knowing. The doctor's looked back and nothing was present in those images then. I often wonder what I could have done differently.

Timeline of events/diagnosis

While vacationing with the family in the happiest place in the world, Disney World, at the end of April, I felt a lump on my left breast.  I returned home and called the doctor.  I was seen on May 6th.  Here is a rough timeline of the events that followed:

May 9th-Mammogram at CR
May 16th-Ultrasound/Biopsies at NWH
May 17th-Diagnosed with breast cancer by Dr. Anderson
May 20th-MRI at NWH
May 24th-Met with Surgeon, Dr. Specht, genetic counselor at NWH and then Medical Oncologist, Dr. Comander to discuss treatment plan at MGHW
May 25th-Bone scan/Echo/CT scan at MGH
May 26th-Started my first round of chemo at MGHW
May 31st-Biopsy to place a clip/marker in the infected lymph node and port installation at MGH