My sanity

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When I was pregnant, I had a large spiral notebook that accompanied me on a daily basis. It went to every doctor’s visit, every ultrasound and all of the classes. I used it to keep track of the things I needed to accomplish, the items left to purchase and the research I did throughout pregnancy. Once Jacob was born, I often looked back on those notes to find an answer to a question that I had or to jot down the questions that I had for an upcoming checkup. I still have the notebook now, though I don’t use it like I once did. I smile when I happen to glance at it, knowing all of the scribbles and love it is filled with.

Though the yellow spiral is no longer my go-to notebook, it has been replaced by multiple notebooks. I’ve mentioned chemo fog before, and I promise to spend more time on it in a future post, but I had no idea how real it was until I was in the thick of it. I consider myself a relatively organized person and I now find myself needing to write down everything to keep my head straight. Setting aside work hours, my weeks are filled with follow-up phone calls, checking on claims, (re)submitting documentation, scheduling (and rescheduling) appointments and trying to figure out who I need to call next. And that’s just for me! Then there’s the day-to-day activities of bill paying, little man’s checkups (and surgery consults) and everything in between. Life is quite busy and I need a way to keep it all straight.

So, I turn to notebooks. I have a notebook for each activity in my life. The ones that you see pictured are the ones that I touch almost every day. Two are filled with notes about the two weddings that I’m blessed to be a part of this year, one contains the ins-and-outs of everything that is cancer related (and has lots of post-its for easy access to the parts I need often), one for little man’s adventures, one that is filled with writing specific to my cancer experience, one that is filled with ideas that I have for the book that I want to write….and that doesn’t include the planner that I carry in my purse to keep track of the appointment times and locations. I try to put it all in my phone but sometimes it’s easier to see it on paper.

It’s a lot…but it keeps me sane. All of it. I write it all down so that I can clear it from my head and yet go back to it later and be able to recall the conversation or the outcome. I carry them with me so that I can grab one to jot down a note or two when it comes to me.

I’m anxious for the day that I will be able to look back on the cancer notebook and no longer need it – the appointments and the labs and the claims no longer needed. Though, I don’t think I will keep it around to remember fondly like my yellow spiral notebook…I think I may have to burn it. That doesn’t count as burning literature, right?

 

Today’s updates…

Today was an eventful day. Joe & I met with the plastic surgeon for quite a while and learned a lot about what the coming months will bring. There are still a few unknowns because they are based on how my initial surgery goes but I feel comfortable with the next steps. Some of the things that I have learned:

  • The day prior to surgery, I will meet with the plastic surgeon again. He will “mark” me for where the incisions need to be made by my breast care specialist the following day. She will adhere to them the best she can, however may need to move slightly based on the tumor/lymph nodes. This same day, they will provide the specific instructions on post-surgery care and give me prescriptions for antibiotics and pain medicine. Prior to my appointment, I will shower and that will be the last time I can shower until the drains are removed (2 – 3 weeks).
  • The morning of surgery, my breast care specialist will perform the actual mastectomy, including the removal of my left lymph nodes. This will take approximately 1 – 1 ½ hours. Once she is done, the plastic surgeon will then come and place tissue expanders in and stitch me up. This will also take 1 – 1 ½ hours. After surgery, I’ll be woken up and the plastic surgeon will be there to speak with me about how everything went. (Good thing Joe will be there to remember and understand everything!) Once they have determined that I am not having any bad reactions to the anesthesia, I will be discharged to recover at home.
    • I was really nervous about this being an outpatient surgery and asked about the ability to stay overnight in the hospital. I learned that staying the night increases the risk of infection and that is something that needs to be avoided. Plus, I would be more comfortable at home (well, as comfortable as possible!).
  • I will have 3 drains after surgery; two on my left and one on my right. They are used to catch the fluid that is draining from the surgery sight. Hopefully the first drain can be removed after a week but the other two are likely to stay for at least 2 weeks.
  • The stitches will all be internal and the incisions will be taped on the outside. The tape will be removed during my 1 week follow up appointment.
  • The tissue expanders are used to (literally) expand the tissue where my breasts were. They are initially filled with about 150 cc of saline and more saline will be added to them each week. Since I will require radiation, only the left tissue expander will be filled in the weeks prior to radiation. Once radiation is complete, then the right tissue expander will be filled and the two will be evened out in size. I will keep these expanders in until reconstruction surgery, which will occur approximately 6 months after I have completed radiation.
    • I have read a lot about the tissue expanders and the recurring theme is that they are uncomfortable and tight. I have also heard that over time that feeling gets slightly easier so I am hopeful that it won’t be too uncomfortable since they will be in for so long.
    • The reason that the tissue expanders need to stay in until after radiation is because the radiation will likely damage the implant.
  • I learned a lot about the different options available for reconstruction. No decisions were made today regarding the reconstruction because it all depends on what happens during surgery. I learned where the incisions will likely be and that they will be different on each side, since my left includes lymph node removal.
  • Recovery is pretty lengthy but I’ll be able to start radiation about 6 weeks after surgery.

I’m sure there’s more that I learned today but that’s all that I can recall right now. There’s a lot to process and it’s starting to sink in that I’ll be having surgery soon. I’m anxious for surgery and yet dreading it. It is going to be a challenging few weeks while I recover but it’s one more step in the process to being cancer free.

Time to start making a list of the things I should get done prior to surgery – it’ll be here in a flash!

A larger version of myself

Four years ago, when my little sister traveled to Florida to participate in the first ever Brown-Hall-Rivers- Thanksgiving-Extravaganza, Joe & I learned that Rachel makes the best fried chicken and mac-n-cheese. Not having ever tried hers, she offered to make it for us. Whoa, it sure was amazing!! With her visiting again, I asked her ahead of time if she would make it for us while here. She gladly agreed – yay!

When first diagnosed, I had a vision of pants falling off of my hips and sunken eyes…basically a scary, sickly version of myself. A version that screamed – I have cancer! The version of myself that I wasn’t expecting, was the one that has a hard time buttoning her pants. I did not anticipate the weight gain.

I figure there are at least two reasons behind this.

  1. It’s no secret that treatment makes me much less mobile than I normally am, which is why one of my goals for this year is to be more active. Treatment is exhausting, especially the two weeks following. As my body recovers, I gain more energy each day but I still find myself exhausted at the end of the day. It’s challenging to find a balance between the things that I want to do and the things I have the energy to do.
  2. I think we all know how much I love food. The 7 – 10 days after treatment, it’s hard to eat. I am so hungry and yet it’s hard to enjoy food because of the food aversions and metallic taste. And why not make up for that deliciousness in between treatments by overcompensating? I literally dream about which foods I want to enjoy once my taste buds are back – and then I indulge in all of that fabulous food the moment that I can!

I am sure there are other factors, such as my body focusing on other (more important) tasks like killing this horrible disease. But either way, I am continuing to find a balance between enjoying food, moving regularly and not exhausting myself in the process. Plus, I don’t want to invest in a new wardrobe to accommodate an expanding waist line.

All that being said….my sister made her famous food tonight for dinner and let’s just say, I might need to rely on the old pregnancy trick of using a rubber band to expand your pants slightly. The chicken was oven-fried and I walked my mile today so that counts, right?

Oh, and Mom’s cooking tomorrow….mmm…

Following dreams

After the car accident, I wrote to my home church in New York and shared what happened. I don’t remember all that I wrote but I do recall saying “I don’t know what God has planned for me but I know that I survived for a reason.” I don’t know why I felt that way but I knew in my heart that it was true. Whatever reason and whatever happened from that point forward, I knew God had a vision.

The pastor wrote me back and, as it turned out, he had gone to school with a pastor local to where I lived at the time. I immediately began attending the church and loved it. I felt at home again, like I had at the church I previously attended.

As time passed, my attendance waivered and eventually stopped. I am not proud of that but it is true. I think part of me was angry because of everything that had happened and I was struggling to make sense of it.

Last June, my brother-in-law asked that, for his birthday, I attend church 3 times. I agreed and started by watching church online while searching for a new church to attend. Soon after, my journey towards diagnosis began and I didn’t attend the three as I had promised. It weighed heavily on my mind and I was determined to eventually attend.

Today, which is oddly enough my sister’s birthday, I attended church. It was a fulfilling moment for me emotionally and it was food for my soul. I am once again reminded that I have a purpose in this life, whether I know what it is or not. In the car, I found my mind wandering to my post about MIB3 and the journey that I am on. I wonder about this version of life that I live and the decisions that I have made along the way to get to where I am. I am again humbled by the thought that I would not change any of my past decisions because they have led me to where I am today.

But I have had a thought. A thought that I ponder frequently. I wonder if this is the version of life that I have because God needed an extreme measure for me to refocus and listen to what is in my heart. Because of my diagnosis, I am filled with a purpose and drive that I have not felt in a long time. I am determined to fulfil my dreams and aspirations and to live a life that betters my family.

I can’t help but wonder if this new found purpose is because I ignored God’s plan for me previously or because I wasn’t following my dreams. These dreams aren’t outrageous in nature but they are simply what I hold in my heart as accomplishments that I want to achieve in my life. I am reminded of the importance of fulfilling my own dreams, so that I can demonstrate to little man how vital that is.

Rachie

When we were younger, my little sister and I shared a room. I remember when that room was filled with a full size bed that we shared and we all traveled to the local furniture store to pick out bunk beds. I was so excited to have the top bunk! This lasted a while but eventually I moved into my own room. Wanting to embrace my newfound dependence, I refused to let Rachel sleep in my room at night. She would try to tattle on me to my parents but would eventually retreat to her room.

Most mornings though, I would awake to her sleeping in my bed.  Her feet would be next to my head and she would be snuggled up to my legs. Some nights I would even find her and my baby sister tucked into my twin size daybed!

I remember being so angry at the time, but looking back, it is a memory that I cherish. Last night, my sister traveled to Florida to celebrate her birthday. We spent the day together and shared many laughs.  Neither of us could remember the last time we spent her birthday together!

The day was filled with lots of dancing with our boys, fishing (Joe taught us lots!), delicious food, walks with our momma and of course sister snuggles. What a great day!

Each day I find myself more and more  grateful for the everyday moments that make lifelong memories.

Where in the world…

After Joe & I were engaged, we started thinking about our honeymoon. Where in the world would we go?! The options in our minds were endless…we explored the idea of Fiji, Napa Valley, a week in a houseboat locally, Disney World, Europe and everywhere in between. Countless hours were spent researching where to go, how much it would cost and how long we could stay. Despite all of the research though, we couldn’t make up our minds!

Time continued to fly, as it often does, and all of a sudden it was a week before our wedding and we still hadn’t booked our honeymoon. Eeek! We started to research some more and decided on a cruise. There was one leaving just a few days after our wedding. Neither of us had been on a cruise before and weren’t really sure what to expect but we decided to go for it. So 3 days before our wedding, we booked it!

Little did we know at the time that we booked it, that we had picked the newest and greatest of the Norwegian Cruise Line ships – Epic. It was incredible. We spent 7 days on this ship and traveled to the Western Caribbean. We didn’t book any excursions ahead of time and decided to “wing it”.

Our first stop was Costa Maya. After a day of cocktails on an amazing beach, we walked into a local town and found a tequila shop set up in someone’s home – literally. We met the homeowner / tequila expert, as well as his daughter and a few friends of his, and spent the afternoon learning all about tequila. It was amazing! We bought as much as we could hold when we left. They didn’t even have real bottles in it so we filled all of our water bottles! He now owns a restaurant on the beach, where he sells his tequila. Someday we will visit again!

Next was Roatan, where we walked the town for hours and shopped a little. We met a local artist, learned about him and his family and enjoyed some of his artwork. It was beautiful.

Our last stop was in Cozumel. At this point, we felt relatively comfortable exploring on our own so we decided to rent a scooter and explore the island. We started by following the tour buses to the local Mayan ruins, where we learned about the history of the Mayans. Next, we decided to follow the road along the coast. We stopped every mile or two to look at the ocean. It was incredible. The waves crashed beautifully against the shore, taking the turquoise water and spilling it amongst the rocks and sand. Amazing.

We were sad when it ended and yet we couldn’t wait to experience such an epic adventure again. To celebrate being cancer free, we want to plan a dream vacation. Somewhere beautiful, possibly exotic, somewhere that we can enjoy the land, the water and the world while creating memories together. I once again feel like the choices are endless, and yet I can’t decide where to go!

Where have you traveled, that you loved? Where would you go, if you could travel anywhere in the world?

Decisions, decisions…

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When this journey first began, things happened very quickly. It was one doctor appointment after another, with scans and blood draws in between. When I received the phone call with my lab results from the genetic testing, my first question to the nurse was “Since I’m negative for the gene, I won’t need a mastectomy, right?” She explained that it may be possible to avoid but we would chat again after the 6 treatments were complete.

I remember feeling a sense of excitement that I would be able to have a lumpectomy to remove the tumor and be done. It was a knee-jerk reaction to have the less extensive surgery, since I anticipated that it would mostly be “exploratory” to ensure that the cancer was all gone.  At least, that’s how I sorted it out in my head. Since that day, which seems so long ago, I have done my own research, talked with many people and asked all of my doctor’s what their thoughts are for me.  I’m not sure when it happened, but at some point along the way my thought process changed.  I think it mainly has to do with the size of my tumor and my lymph nodes but I’ve been leaning towards the mastectomy route.  And after doing a little soul searching, I feel that it makes sense to have a double mastectomy.  Frankly, I don’t want to go through this again. Either way though, I trust my doctor’s and was anxious to hear what my surgeon thought today.

While waiting in the room for her, Joe picked up a magazine that had a story about “Orlando’s finest doctors”.  My oncologist and my surgeon were both featured in it.  I think it’s important to have trust and confidence in your doctor’s and I have both.

The first thing the surgeon did was ask me what my feelings were.  I explained my thought process and what my opinion was and that I was anxious to hear hers.  Her thought? The same as mine. She even mentioned that if it were her body, she would make the same choice.  She tends to be conservative, which I appreciate. I mean, how else is she going to help me live until I’m 97?

The decision doesn’t come lightly.  I’ve spent many late nights wondering what to do, what was right, what would make me feel whole and good again.  I feel in my heart that this is the right choice for me and my body.  And I am at peace with that.

So it’s settled and surgery has been scheduled. On February 2nd, I will have a simple mastectomy of my right breast and a modified double mastectomy of my left breast, including lymph node removal.  I will have both breasts removed and tissue expanders will be put in their place. Those will be used to literally expand my breast tissue until I  am able to have reconstruction done, which will likely occur after radiation therapy is complete.

I still have a list of questions for the reconstruction doctor (also featured in the magazine!) but I am grateful for the decision to be made and for the next phase of this journey to be scheduled. I don’t anticipate that surgery will be easy and I am a bit concerned about lifting little man (or lack of lifting) but we will get through it and be stronger in the end!

Phoenix Tears

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With the exception of one year that we traveled to the cold Northeast to visit my family, we have spent every Christmas in Florida for the last decade. Every Christmas Eve, we head over to Joe’s parent’s house and meet up with his mother’s side of the family. We all have a chance to chat and catch up with each other, eat an outrageous amount of delicious homemade Italian food and open gifts.

A few years ago, Joe’s uncle surprised us all with a new tradition – the bag of coal. He began by presenting the bag of goal to someone for something “naughty” that they did that year and the following year, that person would then present the bag of coal to a new recipient. The reasons for being given the coal have varied each year from sports teams losing to accidentally running over a sprinkler and breaking it.

Last year, Joe was presented with the coal. We chatted about it briefly but then I didn’t think about it again. When we arrived for dinner this past Christmas Eve, I had a moment of panic that we had forgotten the coal! I asked Joe if he remembered it and his eyes got wide and he shrugged his shoulders. Eek! Well, maybe nobody will remember and we can bring it tomorrow? I thought to myself. Oops!

After all the gifts were open, I was sitting on the floor playing with Jacob’s new keyboard. As he made music, Joe asked everyone to come into the room so he could give away the coal. Surprised, I looked up as Joe picked up the bag, which had been hidden deep under the tree, and handed it to me. The entire room went quiet as I reached out and took it from him.

I looked inside. There was a small, glass jar with a cork top. Next to it sat a rolled up piece of paper that was tied with twine. I pulled the jar out first. The words Phoenix Tears were written across the middle and there was, what appeared to be, shredded twine inside. I looked at my husband, confused. He simply smiled.

I reached in and pulled out the rolled up paper. I removed the twine and unrolled it, Jacob’s music continuing in my lap. The paper read:

Phoenix Tears

In this bottle you will find the nest of a Phoenix, which has been soaked in his tears. The Phoenix rises from the ashes of an extreme flame and is the symbol of strength. Although you cannot see him, he is always with you and his tear-soaked nest is his gift to you. When the coal from this bag burned, the Phoenix left you his tears to always remember that even when the most destructive fire burns, an amazing transformation takes place. The coal was the fuel that helped the fire to burn and the Phoenix is what emerged from the devastation. You have been able to slowly extinguish the flame that is attacking you and the transformation you are experiencing is a powerful one. I know the amazing and beautiful person you are transforming into will be just as amazing as the Phoenix, who left you these tears and nest. You are my and Jacob’s Phoenix. You are amazing and I thank every day we have with you.

As I retype my husband’s words here, I am again crying. My husband is a man who loves to chat but is not a fan of writing…yet his words to me are powerful and beyond beautiful.

As I prepare my thoughts and my questions for the surgeon tomorrow, my husband’s words fill my head. I don’t know what I ever did to deserve him and his love but I am so incredibly thankful for all of it.

Day 6 – DONE!

Day 6 Done 010416Well, I’ve survived the week! I am DONE with the 6 hardest treatments and what is arguably the hardest part of this journey. How cool is that?! Each day I feel a little better and the metallic taste is disappearing more and more.

Today I met with the oncologist and he agreed that I’m ready to meet with the surgeon again. We chatted about symptoms this time around, which were quite similar to the last 5 except more tiring (is that possible?). This round I also noticed that my tumor and lymph nodes were quite painful again, more so than before. We joked about the weird white lines on my fingernails, which I learned is the body’s way of dealing with physical stress. I’m just glad they didn’t fall out! I read about that being a symptom at the start of this and was really hoping that it wouldn’t happen.

We chatted about the Herceptin treatment that will continue for a while. The side effects should mostly nonexistence, though he explained that the first couple may be a little harder because the other chemo drugs will still be in my system. They will get progressively easier and the most common side effect is being tired. You know what that means?! My hair will start growing back! As much as I’ve enjoyed changing up my look with wigs, hats and scarves, I’m really looking forward to having some hair again. I am super hopeful that I’ll be able to rock a cute pixie cut at my sister’s wedding in July!!

We also talked about timing. The surgery needs to be 4 weeks after my last full treatment, so most likely the end of January. This will work out well because I will have my first Herceptin treatment a few days prior to surgery. He anticipates that my surgeon will recommend a mastectomy based on the current size of my tumor and lymph nodes. I expected that and honestly, it makes me feel better about the long term. He is quite hopeful that everything is now dead tissue, and so am I. Everything that the surgeon removes will be sent to a lab, where it’ll be thoroughly analyzed to determine whether or not there is any cancer remaining in it. I’ll meet with him again a few weeks after surgery to go over those results and what they mean. I’m praying for nothing but good news out of that!

I’ll still need radiation, which will start 4 – 8 weeks after surgery. The idea of surgery and radiation seemed so far away in the beginning of this journey, and yet here we are already! Time is moving fast but I’m grateful for the progress it’s making in my healing.

I meet with the surgeon Wednesday and anticipate that I will learn a lot more then. I have a long list of questions and a partial decision in my head based on my own research but I am anxious to hear her thoughts and put together a plan of attack.

I feel good about today and it was hard to fight off the tears when talking about being done with the 6 aggressive treatments. He said I didn’t complain once along the way and that made me smile.

Goals!

I’ve been thinking a lot about New Year’s Resolutions for 2016. In the past, I typically resolve to lose weight or exercise more. For the most part, I have been successful in these resolutions for most of the year but at some point along the way I cave to my old habits. Last year, our family decided to have a resolution together and we resolved to eat less processed foods and focus on clean eating. Since Jacob was starting solids in January of last year, it was perfect timing to start this resolution.

Overall, we did quite well and until my diagnosis we had spent most of the year without processed foods. We have faltered slightly since August, as I have indulged in between treatments in some not-so-great food choices. I blame my love for food and the amount of days that I don’t eat as enablers to my overindulgence in between treatments (chocolate, anyone?)

For 2016, I want to focus less on “resolving” and more on “goals”. I asked myself two questions: What is important to me and my family? And what do we want to accomplish this year? After lots of pondering, I’ve decided on the below goals for me – and for my family. (Don’t worry, Joe’s on board too!) I am a big believer in voicing your goals if you want to truly commit and make them happen.

  1. Get Healthy – At first, I thought Beat cancer, of course! My main goal is to be cancer free this year but I want to stay that way too. During my biopsy, my breast care specialist told me her goal is to help me live until I am 97 and frankly, I want to do all that I can to help make that happen.
    • MOVE! Now that the hard part of treatment is over and I’m regaining my strength every day, it’s time to get moving. I spend a large part of my day sitting at work and I know that isn’t healthy for me. I’m resolving to start walking at least a mile a day and I plan to increase that as I can.
    • Food…oh, how I love food. But I need to get back to the no processed foods and eliminate sugar as best I can. The days are hectic and I often feel rushed at home at night with all there is to get done before bed, dinner included. No more excuses. Dinner needs to once again become the time of night where we can cook together as a family and eat together as a family while we talk about our days. It’s one thing that was a non-negotiable when I was a kid and I plan to make that true again this year. I want to fuel my body with food that is nutritious, delicious and will help fight off cancer from here on out.
  2. Be Financially Fit – It’s no secret that breast cancer treatment isn’t cheap. I am incredibly fortunate to have health insurance that covers a significant portion of treatment and I cover the deductible, co-insurance and any prescription costs. Putting all of that aside, I want to refocus spending and saving.
    • Budget Check! Joe & I spent the day reassessing our finances and redoing our budget. While it’s a little stressful to take a hard look into the status of our finances, I feel better knowing where we are at, being able to try and plan for the expenses we know will come and project what our budget needs to be each month.
  3. Write – Oh, how I love to write.
    • I want to write every day, at least once a day. Maybe not always here, on my blog, but somewhere. It soothes my soul and clears my mind – and I enjoy it so much. I need to make time for that. I think writing every day, even if it’s just a few words, will make me feel good inside.
  4. Read More – Books, books, books!
    • I have a feeling surgery will be enabling this goal a bit while I recover. I love to read but life has been a little hectic lately and I haven’t been reading as much as I would like to be. This goal is two-fold with not being glued to my phone as much. I don’t have a book goal in mind but rather than taking to my phone and mindlessly scrolling through apps, I’d like to spend that time reading a few pages when I can.
  5. Enjoy the Every Day Moments – This is arguably the most important goal. If there is nothing else that I have learned over the last 6 months, it’s that life is short. Last week, a high school friend passed away suddenly from a heart attack at the age of 31. Thirty-one.
    • We don’t know what tomorrow will bring and we need to live in the moment. I don’t mean go crazy and spend all your money and forget your worries. I mean that if my little man wants me to stop doing the dishes and read him a book or dance to his music, I’m going to do that. I’m not going to ask him to wait until I’m done. Because these every day moments, these are the ones that create memories. These are the moments that are worth living for.

So there you have it – my goals for 2016. It’s going to be a great year. I just know it.

What are your goals?