Christmas day is almost here and although it has been busy, I am much more relaxed this year. Exactly one year ago I was recovering from surgery, diagnosed with cancer…again…and informed I needed to be away from my children and home to be treated by the best surgeon. Little did I know that after traveling to the Mayo Clinic that I would still need further treatment. It’s a good thing I didn’t know that at the time or else I do not know if I would had it in me for the radiation fight during the summer. Every day I wake up with aches and pains, but this month I am also waking up with a pit in my stomach thinking about the events that transpired one long year ago. However as my children scream, run and laugh in the morning the pit quickly disappears as I think of where I am today. 
I continue to attend therapy on a regular basis. As I leave for my appointments, Bobby and Brody always give me a kiss goodbye and tell me “have a good therapy, I hope you feel better.” Attending therapy has simply turned into a normal thing for my children to see me attend. They know it is something I need to do and that it helps me get better. I have started to get some energy back, however I am still very tired. I have suffered from constant headaches and now have really bad TMJ pain. Recently I had Botox injections to help with the headaches and TMJ. My dry mouth associated with the radiation is really bad/gross. I have tried every type of dry mouth product there is out on the market and they are just okay. It helps for a few minutes and that’s it. Since I had so many lymph nodes removed the drainage in my face and neck is difficult. My face/neck are often swollen and sore so I was fitted for this really awesome compression mask that I get to sleep with each night. The kids don’t think anything of it and good thing I have such a supportive husband! (I can take off the piece that crosses in the front and I have another piece to wear over my eyes as needed!) 

Recently I had my first PET scan after completing radiation. I had a scare and had to have a biopsy done, however it all came back just fine! My first good report I have received in a LONG time. I will continue to be monitored every 3 months, so life will continue to be a roller coaster ride. After my neck PET scan, I will be going under anesthesia for my next scope for precautionary reasons. Since I have not fit the mold through this whole process I have found that I need to continue to read, research and advocate for myself at all of my doctor appointments. 

I still take life one day at a time. I often get very anxious when I begin to think ahead. It’s very difficult for me since I was always a planner, but I have come to realize that life doesn’t always go as planned. For now, I am doing everything I possibly can to stay healthy and feel better. 

To those of you struggling with cancer and other health related issues you are in my prayers EVERY SINGLE DAY. Keep up the fight!

(Blog written 8/15/16 but apparently I forgot to post!  Forgeting has been the story of my life…)

Wow, I’m not quite sure where the time has gone and wish I would of blogged more during my time being treated at Johns Hopkins and since coming home, but I just did not have it in me.  I have many blogs that I started to write, but I would get distracted, get too tired or would just lose my thought that I ended up just deleting them.  My radiation oncologist told me this thought process is completely normal with the medications I am taking and losing my mind is actually a good sign because he knows the medication is working.  (I’m glad that’s a good sign for him because still to this day and every day during treatment I struggle with legitimately losing my mind and forgetting EVERYTHING!)

So here I am now…

HOME!  Exactly where I should be with my husband and three children.

I have completed 30 rounds of radiation.  It was one of the toughest experiences I have ever been through and I do not know if I would have been able to get through it without my amazing support team.  My mom and Natalie were with me at each treatment and Rob and the boys came to a few treatments as well.  I thought it was important for Bobby and Brody to see where I was going each day so they understood enough in their little minds why Mommy was away for such a long period of time.  But let’s be honest, each day I was in the waiting room Natalie stole the show.  I think this really helped me get through my treatments and I believe she was able to put a smile on many hospital guests and employees.  Previously I heard that the people in a radiology waiting room are very different than any other waiting room and I can attest that this is very accurate.   Each day I saw the same people and learned a lot about each person and their journey.  They will always have a close place in my heart and I will always be praying for them, on a first name basis.

Currently I still have a lot of help.  The radiation exhaustion is insane.  I thought it was going to be similar to the first trimester of being pregnant, so I thought…I got this!  No way!  I was sooo wrong!  I simply never feel rested regardless of the amount of sleep I get and then all of a sudden I hit a wall and cannot do anything.  My doctor said the radiation will be working in my body for about 3 weeks after my last day of treatment and then side effects will slowly go away.  I look forward to each day of slowly getting better and I want to be back to a normal routine.  I will get there some day.

To all of my frequent blog followers, I am sorry I didn’t do more posts during treatment but all of my effort and energy was focused on physically getting better.

My heart aches…I miss my boys….being home…my routine…being the mom I used to be. It aches every single time I walk into the hospital…the number of sick people right in front of my eyes…to the friends I’ve made in the waiting room…to the woman battling this fight all alone because she doesn’t have anyone…for my family, friends and everyone that has been by my side for their constant worry about me.

Then I shake my head, take a deep breath and remember the big picture.  How lucky am I? In the grand schemes of life, this is such a short amount of time away from my boys so that I can see them grow the rest of their lives. I continue to shake my head and open my eyes and see the joy Natalie brings to the hospital…everyone knows her. They know when she arrives because her smile lights the room, her wave stays high in the air and the babbling and screaming that she has arrived can’t be missed.

Today is day 12 of 30. I’m getting there. The first few sessions were not bad and then it hit me like a ton of bricks. Some days are way worse than others but I’ve been warned I’m going to have a lot of those days.  I honestly don’t know where the days have gone or where my brain has gone either. I can’t think straight, I can’t remember anything and the time just passes. I just started taking pain medication around the clock but my brain was gone before that. Perhaps this full dose of a nerve blocker is blocking the way my brain normally works? I’ll have to ask the doctor.

My heart aches a lot right now and it has been for a long time, but I know after all of this it will be by far the strongest muscle in my body.

Here’s a picture of me during my daily treatment.

I can’t believe the last I posted was the weekend of Memorial Day and here I am approaching Fourth of July weekend.  The past few weeks have been a complete blur.  The logistics of preparing to be away for 7 weeks from my home, away from the boys, organizing schedules, arranging childcare, setting up appointments, going to appointments, recovering  from surgery and preparing for radiation have seemed to take all my time away.

During treatment my mom, Natalie and I are staying about 20 minutes away from Johns Hopkins hospital in an apartment for 7 weeks.  Rob needs to continue working so he is staying home with the boys and my mother-in-law, grandmother and aunt are helping every step of the way.  We decided on making this arrangement because I knew if all of the children came with me I would not get adequate rest.  We wanted to keep the boys on their normal schedule as much as possible, but I wanted Natalie with me.  She is my last baby…I do not want to miss the first time she does something and I believe she will be great medicine for me.

Today I completed day 4 of radiation treatment!  My mom and Natalie go to treatment with me each day.   Natalie brings a smile and such positive energy in a room full of radiation patients, everyone just LOVES her and bringing her distracts me from the actual situation. The radiation treatments do not hurt, however I can’t believe after only 2 treatments I am started to already experience side effects – dry mouth, very thirsty and swelling in my neck.  My oncologist told me that symptoms happen at all different times for people, but because of the number of surgeries I had to this region can be the reason I am starting to experience side effects this early on.  Currently my swallowing is normal so I am taking every good day as it comes.  Next week I meet with a speech pathologist to work on swallowing exercises, which I am sure I am very familiar with from my previous therapy.  The doctor informed me that it is going to be extremely important to do these exercises in order to preserve as much of my swallowing capability as possible.  I will continue doing everything possible….my babies and family need me to get better!

Here it is. The weekend that everyone anticipates every year. Memorial Day weekend, the kickoff to summer. It’s normally a weekend of so much joy and celebration to the start of a great summer for me as well, but this summer is very different. I’m not looking forward to this summer. I really wish that I could close my eyes and fast forward to the winter again, and I hate the winter months.
These past few days since my surgery have been filled with being in a lot of pain, needing 24 hour care with the kids and ultimately bad news most days. I attended a post operation appointment and was informed that 7 of 60 lymph nodes that were removed were cancerous.  The good news was the cancerous lymph nodes were all encapsulated and the bad news was I definitely needed radiation. I was referred to a radiation oncologist at John Hopkins who has the highest success rates on radiating the larynx and neck – his medical partners are in Australia! My doctor explained to me that some places are better than others and for my situation John Hopkins is where I need to be. I met with the oncologist for 2.5 hours and basically went through everything. I was extremely happy, impressed and satisfied with being referred to him. I have full faith he is going to do everything possible to give me the absolute least side effects with a great outcome. Of course it’s not going to be easy and there will be side effects, but ultimately I’m in the best hands. He reviewed statistics with me: considering laryngeal cancer is extremely rare in my age/gender/non-smoking history, it is 1-2% chance that this type of cancer would affect the lymph nodes on the same side, and less and 1% chance that it would spread to the other side…I’m that rare…unusual case. Therefore based on all of this, chemotherapy is in question. I meet with the medical oncologist next week to learn more about this treatment option in conjunction with radiation.
Fear, worry and stress are extremely high emotions right now but keeping those emotions somewhat grounded is having my three children that are full of energy and excitement for being outside and enjoying this beautiful weather. I may feel like crap and I may not be able to do much BUT listening to the boys run around like absolute maniacs, ride their bikes until their hair is a sweaty mess, swing on the swings high up to the sky and just laugh all day long is what keeps me going. Having moments of getting messy whether it’s dirt from the boys being outside or from Natalie spitting carrots all over me will be the moments I will treasure forever. Ultimately my health situation will pass, as I will beat this and it will be an absolute horrible memory that I can only hope will be covered with the amazing ones from my children growing up.

“Mommy, you stay at the doctors a long time today. You can come home when you’re all better,” said Bobby, my four-year old.
Bobby is the sweetest, most caring little boy. He looks at me every day since I have been home from my most recent surgery with such concern on his face. From his innocent eyes he sees this huge incision across my neck and two drains poking and hanging down filling with fluids. He walks me to my bedroom during the day and asks to cover me up with the blankets and closes the door so I can “rest.” He is never prompted, he just wants me to get better so “we can go places.”
Little does this four-year old know that he is giving me the most encouraging words in the world. Bobby, Brody and Natalie are three of my reasons for this fight. They need their mommy. I may not be the best mom to them that I can be right now, but I will get better and I will be the best mom to them for the rest of their lives.
I attended my post op appointment today to talk to my doctor about my serve pain – which an increase in pain medicine was prescribed, discussed keeping my drains in until next week – since there is still too much output and I don’t need more swelling, discussed scheduling my appointment to meet with the radiologist at John Hopkins sometime next week and was informed that in addition to radiation therapy I may also need chemotherapy depending on the pathology report. “SURE! Why not?! Just add it to the list!”
This has all been so much to process and so much to manage. All I know is that the fight is really just beginning when I thought it was about over. I need to recover from this surgery as quickly and as best as I can so I can prepare myself physically, mentally and emotionally for the most difficult time of my life. I don’t know exactly what radiation (maybe chemotherapy) is going to involve, but I do know that I am not willing to settle for anything less than the best care, which now involves me going to John Hopkins. I deserve it and so does my family.
I will continue to do whatever is necessary and although I keep getting knocked down, NOTHING will stop me from standing up.

I don’t even know where to begin. After waking up extremely early to drive to the University of Penn for surgery on the Monday morning after vacation, no sooner did I arrive and I was quickly prompted to change into my gown for surgery.

My doctor came to meet with me and informed me that he spoke with my surgeon from the Mayo Clinic and they both agreed to have a complete right neck dissection as well as scope my larynx, which was the original plan. He continued to tell me if anything showed on the larynx that was suspicious a small scrape would be removed for a biopsy and the neck dissection would follow since “the cancer needs to be removed.” This was all news I knew and was prepared for, however as my doctor was talking to me the most fearful term radiation came up. Per the doctors discussion I most likely would be recommended for radiation since it’s now affected both sides of my neck. I started to question, get scared and cry as my doctor tried to ease me before surgery. “Let’s see how everything looks, it’s not definite.”

Upon completion of surgery, my doctor spoke with Rob and my mom and informed them that he removed all the lymph nodes on the right side and more than one lymph node was suspicious. Of course we won’t know how many were cancerous until the pathology report comes back. However,since the recommendations of both of my surgeons is to have the radiation, it looks like I will be doing that treatment.

 
Seriously this sucks! 

 
My doctor from Penn is recommending I get radiation from John Hopkins, since the doctor there is the best in treating the larynx with radiation with the least side effects. Nothing is set in stone yet but I will most likely be having radiation to my larynx (original cancer site) and to both sides of my neck. Even if cancer does not show on my larynx I am in the window for it to come back and if I just treat my neck then a barrier would be created and I would not be able to have radiation to the larynx IF something returned. (Radiation to the head and neck can only happen once in a lifetime).

 
This is all so much to take in. I really thought I was on the mend to getting my life back together and here it is…starting all over again. I will find out more information regarding radiation in the next few weeks, but it won’t start for a minimum of 6 weeks, so the neck dissection can heal.

 
As I came home from the hospital with a major incision across my neck, two drains and to three sick and fevered children I begin to question when will this black cloud leave?

 
All I know is that without my amazing support system I would NOT be functioning.

Our week long, amazing vacation on a Disney cruise has come to an end. It was the first for many experiences and definitely an unforgettable vacation. The boys traveled on their first airplane ride, met many of the Disney characters, swam for hours in the pool and ocean, chased characters around the ship, napped in places other than a bed (which is nearly unheard of for my children), tried many new foods, watched amazing shows and stayed up WAY past their bedtimes! It truly was an unforgettable escape from reality. 
We enjoyed a week unplugged from our day to day lives and enjoyed EVERY single moment, smile and laugh on the cruise ship while we were on board and docked at different ports. 

Now, as our vacation has come to an end the Sunday blues are in full effect, which this time they are much worse than after any other vacation. Tomorrow it’s not only back to the grind of our daily lives but I will be expected to arrive at the University of Pennsylvania hospital very early in the morning for surgery…again. 
All of my other surgeries I was scared…a different kind of scared -the fear of unknowing/what to expect. This time I know a lot more, which at times can be a good thing to typically ease some anxiety, but this time knowing what’s coming is absolutely horrible. Every other surgery that I’ve had I have been told they THOUGHT the cancer was gone.  Of course this time I hope to hear the same thing, BUT this time it is going to be much different depending on how much cancer is found and the formation of the cancer will determine the next treatment plan. I know I can handle surgery, I’ve done it many times before but after this, surgery may no longer be an option. The thought of radiation absolutely frightens me beyond belief. I try to block it out of my mind, but I can’t. 
At this time, I can only hope….wish….dream….PRAY that the cancer found on the right side of my neck is minimal and formed in a way that surgery will be the cure. Tonight I plan on squeezing all of my children tight, especially Natalie since she did not go on the cruise with us, giving them a big kiss while they are sleeping in the morning when I leave for the hospital and continue hoping that the Magical Dreams from Disney follow me into surgery. 
Tonight I’m going to continue wishing upon a star… 

Cancer sucks! It keeps coming back! It’s not fair.  Not to me, not to my family, not to anyone.  I have been pushing myself so hard, doing everything I am supposed to do in order to get better and once again the cancer has returned.  I am sick of getting that dreaded phone call that I have cancer, I have heard it WAY TOO many times.  I am sick of having tests done, being stuck by needles, waiting in doctor’s offices and being told horrible news… but I promise I will do all that it takes to make this horrible disease get the hell out of my body!

The dreaded phone call happened yet again…the cancer has returned!  Every time I have been told “it doesn’t look like cancer,” it always is.  I have been so positive through all of this, but I just feel like I keep getting hit over and over again.  I was very optimistic that it was really gone this time but after having my PET scan and having hot spots show up, I just knew it wasn’t a false positive.

My biopsy results came back today that the cancer is now in my lymph nodes on the right side of my neck (previously everything was on the left side).  At this time, I do not know how many lymph nodes the cancer is in and I do not know my treatment options.  I will be meeting with my doctor at the University of Penn this week and my doctor from the Mayo Clinic will also be reviewing everything to give me another opinion.

This is just another set back but, I am going to keep my head up  and continue fighting the fight.