The new countdown

Two weeks from today I will have surgery. I have been thinking about how this countdown to surgery feels similar to the prior countdown, and yet different. The first phase of this journey is complete and though there are still more phases before this journey ends, I still feel an odd sense of calm.

I was starting to feel the pressure of the looming surgery and all of the things that I want to get done ahead of time. It started to make me feel a little frantic and a bit nervous. My mind wandered a little and the fear crept in…but I reminded myself it’ll be ok. I can’t solve for everything but I can prepare. For me, that means that I’ve made my lists of things to get done prior to February (and started tackling those to-dos!), began the necessary paperwork for surgery and ordered a few books to catch up on reading.

I know recovery is going to be tough and I am dreading the pain/discomfort, the inability to lift and not sleeping in my own bed…but this is one surgery. (I will have reconstruction later in the year but it shouldn’t be as intense as this.) It isn’t 6 treatments that knock me on my butt for a week or more at a time, just to do it all over again once I start feeling better. It isn’t 1 day with 5 more looming behind it.

Yes, it is major surgery. Yes, it will be emotional. Yes, it will take time to heal. BUT I will heal – in so many ways.

Every day I will heal.

Every day I will get stronger.

Every day it will hurt a little less.

Every day I will be one step close to picking up my little man.

Every day will be one closer to my husband hugging me as tight as he can.

And every day I am one step closer to being completely done with this phase.

So I am ready for this countdown to begin, for the clock to start. Because at the end of it, I will be cancer free.

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To friendships

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On the street I grew up on lived a girl my age named Liz. We lived just a few houses down from each other and grew up the best of friends. We played outside together until the street lights came on, walked to the bus stop together and car pooled to school together. Even after high school, we continued to hang out regularly. When I decided to move to Florida, she offered to take the road trip with me and help move me down.

So the day after Christmas 2004, we loaded up her gold cavalier with as much of my stuff as we could fit in it. We even managed a little room for her suitcase! We drove straight through, only stopping for bathroom breaks and snacks – each hour of the drive the temperature rose a little more. The following day, we arrived in the beautiful sunshine of Florida. We unloaded the car, took a nap and then headed out to explore the new city that I would call home. It is a great memory of mine that I will always hold in my heart.

Over the years, Liz & I stayed in touch but not as frequently as we had in the past…until a few years ago when she moved to Florida. Though she moved to the Gulf side opposite of me, we have traveled to see each other and even met halfway in between over the years.

This past weekend, Liz and her fiancé traveled to our side of the state. We spent the weekend catching up, laughing about old times and dreaming about what our futures hold. It was a wonderful weekend that mixed a bit of my childhood in New York with a lot of my life in Florida with an old friend.

We spent time at the beach (where else?!) and while the boys fished, Liz & I watched Jacob stare in awe at the dolphins swimming about. Jacob even had some fun with his own fishing pole while the sun set in the distance. Such a fun weekend!

Life continues to inspire me. Moments like this, spent with an old friend reminds me of how much I have been blessed to experience in my life – and how many incredible people I have had by my side through it all. To friendships – old and new – may your life be forever blessed with them. Have a wonderful Monday everyone!

Radiation

Today was another day filled with learning new things. Joe & I met with the radiologist oncologist to discuss the ins and outs of radiation. The appointment was lengthy, which we appreciated. The doctor took her time discussing everything related to radiation, helping to answer our questions and we were even able to look into the radiation treatment room. I’m feeling a bit like information-overload from this week but I’m grateful to be at the step where I can learn the details of what’s next. A few things we learned today:

  • Usually when I meet a new doctor, I am asked to share my journey to diagnosis (how the lump was found, what happened when/next, when I was diagnosed, chemo dates, etc). I have all of this pretty much memorized at this point but today the doctor came in and (from memory) told me the story. It was an exact recap of my experience last summer, all the way up to finishing chemo and my future surgery date. She even asked about my son. It was an interesting change of pace to me, having my story shared with me versus me being the person sharing it.
  • I have a follow up visit 6 weeks after surgery. This will be used to chat with the doctor again, have scans done to determine where the radiation beams need to be placed and to have me fitted for my…pillow? I’m not sure what the medical term was but basically I will need to lay still while my head and arms (above my head) lay on a “pillow” that is then vacuum sealed around me. It is used so that I stay in place while I receive the radiation treatment. I could see all of these molds hanging on a rack in the back of the room. Interesting to think that my name will be hanging amongst them in a few weeks.
  • We discussed the side effects of radiation, both immediate and future.
    • Immediate side effects include rash and skin irritation, similar to a sunburn but from photons instead of UVs; a sore throat because the lymph nodes in my clavicle will be treated, which is next to my throat; and fatigue, though it shouldn’t be as severe as it was during the 6 chemo treatments.
    • Short term side effects include a raised breast (this has a decent chance of occurring at 30%). There is also the chance of scar tissue becoming worse over time, resulting in the need for an additional surgery to potential remove the damaged tissue. This would be after reconstruction.
    • Long term side effects include a risk of heart attack, since I will treated on my left (I think the percentage was 1 – 3% chance); future localized cancer in the area treated (this percentage was minimal, around .5% but would occur in 10+ years, if at all).
    • Lymphedema is a side effect of removing my lymph nodes and the chance increases with radiation. Basically, if I injure or cut my left arm/hand, lymphedema may occur. This is basically swelling in the affected area but the risk of lymphedema will never go away. Your lymphatic system is used to move fluid around your body, such as fluid to help heal a wound. The analogy shared today, is that when your lymph nodes are removed, it’s like removing a part of the highway. The fluid needs to find a way out and so it starts using different routes, which may not work as well. When radiation is mixed in, that highway – that already has pieces missing – is completely congested, making it even more difficult to move the fluid out. Manual massage is used to help remove the fluid, if swelling occurs.
  • At the planning session 6 weeks after surgery, I will be tattooed three times. These tattoos are basically tiny dots, one on each side of my body and one in the middle of my chest, which will be used as a starting point for each radiation session to guide the beams (and me) to the right position.
  • I have a list of lotions to use that will help with the skin irritation, all of which are bought over-the-counter. As the irritation worsens, the doctor will provide additional moisturizers.
  • Radiation will be Monday through Friday for 6 weeks. The radiation itself will only be a few minutes long. The prep and post radiation activities take longer than the actual radiation, making my total appointment each day anywhere from 15 – 30 minutes long. I will see the radiologist oncologist once a week as well, which will probably be an additional 15 – 30 minutes that day.
  • During the treatment, I will need to lay completely still. In addition to the standard use of the beams, my treatment will include deep inspiration breath-hold, where I will need to hold my breath for 25 seconds at a time with 20 seconds in between. This will be done a few times as well and will help ensures that my heart is protected from the beams. Guess I better practice my breathing techniques!
  • Oh, and I won’t be radioactive, baby!!

That’s all I can think of for now. I’m off to enjoy a glass of red to celebrate this week being over. Hope you all have a happy, safe and fun weekend!!

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.