Highs and Lows 

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.

Mouths of Babes 

“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.

Black Cloud 

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.

Unplugged with Magic 

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… 

Is 5 the magic number?

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!

Statistically I was not the type of person that fit the mold for this type of cancer and when “hot spots” showed on my follow-up PET scan on the opposite side of my neck the doctor was pretty confident it was a false positive, which PET scans are known to have.  I pushed my doctor to order follow up tests, which at my last appointment he was so thankful I spoke up and had him order me an ultrasound, which then turned into needing a biopsy, which confirmed that cancer has now spread to the other side of my neck.  Both my doctors from University of Penn and my doctor at the Mayo Clinic both informed me that statistically this is nearly unheard of! Go figure! At this point in time, I’m so glad I advocated, read my reports prior to my visit and did my own research otherwise I would be sitting here with cancer just waiting on my next PET scan in 3 months thinking everything was totally fine. One thing I have learned is that you need to trust your gut/instinct because NO ONE knows your body better than you do.
To be honest I am very in shock and I know all of my doctors are as well. Very rarely does this cancer happen in my age/gender and it is not known to spread to the other side. We really thought that by this point in the month of May that the worst was going to be behind us so we decided to book a vacation on a Disney cruise, which is leaving on Mother’s Day. We thought this vacation was going to be a celebratory trip after all that we have been through. Never in my wildest dreams did I think I was going to be returning from a week Disney cruise and entering surgery AGAIN the following day. Now, that is exactly what is happening…it’s a complete nightmare!
Plan of action: 
Today I had a fine-cut CT scan of just my larynx (pray nothing shows!)
Rob, Bobby, Brody, my in-laws and I will be leaving on Mother’s Day on an amazing Disney cruise and returning Sunday evening, 5/15/16.  I am going to try my absolute hardest to put this behind me and enjoy this magical time.
Surgery will happen the next day 5/16/16.   During the surgery, the first thing the doctor will do is look at my larynx while under anesthesia to make sure no cancer is showing on the larynx…more can been seen while under anesthesia as my vocal cords will be paralyzed. If there is suspicion, surgery will most likely be over because I will then be having a different plan of action.  (I really hope this is not the case because otherwise I would most likely be going back to the Mayo Clinic and it will really not be good for my larynx.) Fingers crossed nothing shows and the doctor can proceed with the right neck dissection. The doctor wants to really get rid of the tumor that can be felt in my neck as soon as possible as well as remove all the lymph nodes that appear abnormal. At this time, it is my HOPE that the neck dissection is all I need. I will have another beautiful scar, which will now span my entire neck.  I will wear this with pride, strength and determination. IF additional lymph nodes test positive for cancer and depending on the formation of the nodes involved with cancer will determine if any additional treatment is needed. If so, I will be looking at radiation (possibly chemotherapy) but I REALLY DO NOT want radiation. The side effects of radiation to this portion of my body along with my age pose significant problems.  I’m trying to stay positive that I will not need this but have been warned I am at a much greater risk this time around. (This is a very delicate subject with me and I am not ready for it at all!)  So for now, I will continue taking deep breaths and taking everything one step at a time.
I am hoping, praying, wishing with all that I have that my fifth surgery will make me cancer free.

Not again!

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.