On March 25, 2013, life threw us a curve ball. Not just any curve ball either, this one was like, filled with rocks, wrapped in barbwire, and I’m pretty sure I remember it spitting fireballs at us. Well, turns out team Nicki is surprisingly good at ducking and dodging. Now that I cleverly disguised avoidance as our family’s greatest skill set let me bring you all up to speed on Nicki’s journey.
As of December 12, Nicki completed her final round of chemotherapy. It was an emotional 16 weeks, to say the least. Not all bad. Thanks to the ladies at Joan Karnell Cancer Center we had more than one episode of inappropriate and uncontrollable laughter. Jeremy had the home care down to a science, and I’m pretty sure He has earned at least his nursing degree. I did find it concerning when he turned and shouted "scalpel" but luckily I had one. What can I say, we just work well together.
Nick got through her final week of chemo like a superhero. She busted out of there and had more energy than anyone expected. She baked 5000 cookies on her first day of freedom and even ventured outside of the house for the first time to pick up some stocking stuffers. I think we were all so happy she seemed to be having a few good days we forgot to say "Hey, you have no immune system right now, let's just sit in a bubble and watch a movie." It must have caught up with her because a few days later she was back in the hospital for 2 blood transfusions. Determined to be home for Christmas she miraculously persuaded her blood count to reach a safe level and was back home to celebrate Christmas. Side note: literally giving her blood a pep talk. “Come on little guys. I know you can do it!” and so, on.
After receiving a clean CT scan and travel clearance in January, it was high time to hit the road and meet some of the top surgeons in the country to discuss the possibility of reconstruction. This time we were a little more experienced with the process and armed with questions we didn’t necessarily want the answers to. We always have a little huddle before we go in, just to remind each other that no matter what they say, it’s just an opinion. If we don’t like it, we keep moving until we find one we do. We found that opinion in Chicago.
She will be in the hands of Dr. Gary Burget (http://www.garyburget.com) Starting on April 3 and every 6 to 11 weeks over the next year. The first two months are crucial, so it’s essential we set up a temporary home base in Chicago. We are hoping to get settled in by April 1st and aim to reunite Nicki with Bryce two weeks after her initial surgery. Not at all familiar with Chicago, any assistance in finding affordable accommodations suitable to our situation would be welcome.
We are all affected by cancer. We have all lost someone or know someone who has experienced that heart wrenching and devastating loss. Sadly, I know now that although my sister's cancer is rare her fight is not. We're all fighting for someone we love, and yet you're taking the time to read and share Nicki's story. Thank you for helping me fight for my sister.
Yesterday I mentioned and thanked our family and friends who have gone above and beyond anything we could have imagined. After posting the update, I realized I neglected to mention the amazing medical team at The Joan Karnell Cancer Center of Pennsylvania Hospital who have basically become a part of our family, like it or not. I would call you all out by name, but for now I'll respect your privacy. Thank you all for making Nick's time in treatment not so horrible, but, maybe we can get a little Starbucks Sumatra Dark Roast Coffee Keurig K-Cup action? Maybe an omelette station?...to much? In all sincerity, Thank you from our entire family.
I have a confession to make to all of Nicki's supporters who have been inquiring about an update on her status. My standard response, "I just need to find the time," is obviously a sham exposed by my Facebook Status updates about watching Nicki sleep during chemo. The truth is, I don't want to write it. Maybe if I don't put it out there, it's not happening, Or, maybe, I can just delete delete delete, rewrite, submit, and we would be in Cape Cod enjoying a clambake, and, yes in my rewrite Nick will eat clams, and I fill out a bikini top something larger than a 6x. Apparently I have a small percentage of left brain functionality that always shows up late in the game to bring me back to reality. So, I promise to do my best to bring you all current on Nicki's journey. Buckle up, it's rough. As most of you know, the outcome of the 1st surgery on July 31st was devastating. I was fairly limited in the details mostly because Nicki has decided not to look at her face and I knew she would read the update. Now with some time behind us she is still processing things and although she still has not seen her face she is completely aware of what's missing. Let's start with what's not missing. My sister's spirit, sense of humor, sarcasm, a husband that puts all others to shame, a 2 year old who doesn't even notice his mommy looks different and lastly a team of family and friends that would drop everything for a chance to help. So, what's missing? In short, since Nicki's cancer invaded her nasal cavity and surrounding areas it was necessary to remove her nose, a portion of her cheek and her upper lip. Since the first surgery Nick has endured countless visits to the ER and a few failed attempts at reconstruction due to radiation necrosis.
Thankfully, Nick's condition has stabilized, and I'm able to report a positive update. She's half way through chemotherapy and doing well. Recent scans do NOT show any signs of a tumor!!!
A note from Nicki:
I feel like the clouds are finally starting to open up and I can start seeing a glimmer of light. I still have a long road ahead of me involving many reconstructive surgeries, so I'm trying to pace myself by setting mini goals in between. My first goal is to finish chemo successfully. My final treatment is December 12th and believe me that day can't get here soon enough. You might say I'm a little eager to start living my life again. Your prayers and support are my inspiration. I am truly humbled.
As many of you already know, Nicki underwent surgery on July 31 to remove the cancer that planted itself on her face. 40 surgical biopsies later the 10 + hour surgery was deemed a success. This is wonderful news, right? Why isn't the surgeon smiling? I've learned to always wait for the “but” before celebrating. What I heard next left me paralyzed and unable to breathe. It was discovered during the surgery, the cancer had invaded the entire nasal cavity in addition to the other cheek and full upper lip. The surgery was far more radical than anyone had anticipated, including Nicki. My heart was broken for her. The thought of her waking up to discover what she had just lost was unbearable. Every scenario that played out in my head was worse than the last. How will her son react? How will Jeremy deal? How will she smell, eat, talk, sneeze...etc. At this moment I realized, of all the sisters, I’m the one you least want to be with in a crisis situation. After a group hug, Jeremy was sent in to see her while in recovery. I’ll never forget the look on his face when he returned to the family lounge. His eyes were filled with both fire and tears but he was determined not to cry. I’m sure he thought if he did both me and Jamie would have stopped breathing. Jeremy set up camp in Nicki's room for 9 days before bringing her home to us. Now the real work begins. Nicki is still trying to take it all in, as you can imagine. Sure, she has weak moments here and there but even her cute little surgical mask doesn't hide her attempts to smile. It’s a long road to recovery and we’ll be taking the scenic route. The first reconstructive surgery is already scheduled for September 3rd and Chemo will begin shortly after. How quickly she heals will play a role in scheduling future surgeries. There isn't a doubt in my mind that we're all witnessing a miracle. Thank you from the bottom of my heart for all of your thoughts, prayers and words of wisdom.
By Nicki's amazing husband, Jeremy, who I love more every second.
So it's day after Nicki's surgery and she's in the ICU recovering. She's in a little bit of pain and discomfort but the nurses are doing a great job and keeping her feeling good. We've heard from her surgeon who said they were able to remove all of the known and visible tumors. At this point we're waiting for biopsy results of the outer margins, so it may be a few days before the next update. Although the surgery was more extensive then originally anticipated, they were able to start the reconstruction and get her on the right track, that track being cancer free and living her life as intended. I've never met a more resilient person than Nicki and I am so lucky, so freakin lucky to call her my wife. I'm sitting next to her right now, and there is no place I'd rather be.
A message from Nicki's twin sister Jamie:
There have been so many people who have asked what they can do to help during this journey to which my response is always the same please send positive thoughts or pray. I know it's vague so I have a request that I need as many people to please do in order to help its a very specific request: **We really need good news on this pathology report. Can you please pray and anyone else that you know (kids too) have them pray or if they don't pray, just have them picture the doctor telling Nick and Jeremy that she has clean margins and it came back as being cancer free. Have them HEAR those words "CANCER FREE." THERE IS POWER IN NUMBERS
A MESSAGE FROM NICKI:
Since I was diagnosed with cancer 4 months ago my main goal was obviously to get it out of me. As my doctors have explained to me, surgery is usually always the first mode of treatment. If the tumors were on my leg or arm it would have been a no brainer to get me into the operating room as fast as possible. Unfortunately, this cancer has decided to make itself right at home smack dab in the middle of my face. Obviously cancer sucks no matter where it’s located, but when you’re in the prime of your life and suddenly faced with a stage 4 cancer diagnoses and a potentially disfiguring surgery it really sucks!!! Taking this into account, my compassionate team of doctors and I decided to try a round of chemo and radiation first. As you’ve read in previous posts, the treatment was not successful.
In an effort to figure out the next step, last week I had several biopsies taken and this week we got the results confirming all specimens tested positive for cancer. After hearing the disappointing news, I’ve decided it’s time to move forward with the surgery. Once again, let me just state: CANCER SUCKS!!! I wish I could avoid the operation but at the end of the day it’s about my life, not about my looks. My surgeon believes he can remove the tumors, but due to this rare form of cancer, he admits there’s always a chance of missing a microscopic amount. As worrisome as that is to hear, I choose to believe he will be successful and any small cells remaining will be killed with another round of chemo I’ll probably receive after I’ve healed.
The big day has been scheduled for Tuesday, July 30th. It will be a 10+ hour operation which will involve the removal and reconstruction of the right side of my nose, upper lip and portion of the right side of my cheek. I’ll probably also loose a few of my teeth just to top things off!
So now that the next step has been determined, the number 1 question I’ve been getting is “how are you feeling”? My honest answer is I’m terrified! Aside from delivering my baby, I’ve never been hospitalized before much less faced (no pun intended) a surgery this massive it involves staying in the ICU and waking up to a new face. With that said, hopefully I’ll be waking up to a new cancer free face with many, many happy years ahead of me.
Your support through this crazy time in my life has made a huge difference! I’ve never imagined it was possible to feel such love from so many people. I truly thank all of you for your well wishes and prayers!
As stated in my last post, I am not a doctor. It seems my rose colored glasses compromised my ability to see the reality that only the MRI and CT scans can see. After being handed the report I knew after reading the first two words “No Change” it would be pointless to try to comprehend 7 more pages of 6 syllable words. I apologize for giving anyone who relies on my updates with false hope. (Long Pause...wait for it...) Actually, I just realized “False hope” is an oxymoron; the two words don’t belong together. Either you have hope or you don’t. Right? So, when you need to stay positive, why wouldn’t you choose hope over despair? So, I take back my earlier apology. Rose-colored glasses for everyone, if it helps us sleep a little better, laugh a littler harder and cry a little less. Nicki already cracked the code on the importance of positive thinking; seeing as, she hasn’t lost her smile since the first day she heard the words, “you have cancer” …ok, maybe the second day, because that day was a giant tear fest. Where are we now? Well, now, more of the waiting. Yesterday, Nicki endured 7 oral and facial biopsies and judging by the look on her face and Jeremy’s broken hand, it was torturous. The results from the biopsy will determine if there is an increase or decrease in cancer cell activity and hopefully clear a direct path to start phase 2 of the treatment. The medical team surrounding my sister is a dream come true. It really makes a difference when Doctors show a human side and take a personal interest, unlike the first experience we had at a cancer center I will keep anonymous. Thank you to all for your amazing support and please keep Nicki in your prayers. Let me end this update by saying, “I love you the most my sissy”
I'm sorry for the lack of updates; I've been waiting until I had some solid information to pass along, here are some quick stats:
Cancer Fighting Score Card
Which completes Phase 1 of Nicki’s treatment. As much as she will miss the amazing team of people that were taking care of her at Pennsylvanian Hospital I know she is looking forward to a little down time to recover from the side effects and build up her strength to prepare for Phase 2, which is still a bit of a mystery.
July 1st Nicki has her Follow up MRI and CT scan that will determine the intensity of Phase 2.
As much as this may shock some of you…I am not a doctor, however, I am fairly certain the visible tumors appear…well, less visible.
- Are they still there? Yes
- Do they appear larger? No.
According to her Doctor that’s what we need to focus on at the moment. He also reminded us results would become more evident as her face begins to heal and the swelling goes down. That can’t happen soon enough, the waiting and wondering and worrying is getting more and more agonizing.
Nicki has taken on a few lifestyle changes and is juicing up a storm (violently cursing at every piece of kale saying "why can't you be a potato chip you disgusting piece of _ _ _ _") and practicing her new meditation techniques. (Hiding from the little guy in plaid shorts screaming "APPIESAUCE")
Nicki continues to remain positive thanks to all of you and your continued prayers, comments and support. Our family is eternally grateful to all of you
When I find myself deep in thought its hard not to judge the universe and ask questions that even if you found the answers, it wouldn't bring you any closer to finding the solution. Because of this epiphany I’ve decided thinking is overrated and wasting my precious energy. The more we think the less time we give ourselves to take action. So excuse my misspellings and grammar errors in this update as I have officially stopped thinking. If i was forced to say something positive about this ridiculous situation, I would probably say, our family has a new perspective on spending time together, make every second count. I know deep inside Nicki feels the same way. When she says " stop staring at me" or "ok, you can leave now" or " maybe you could stop with the chitchat", I know she means the opposite.
At this very moment , Nicki is receiving her 5th chemo treatment followed by her 20th round of radiation, no, that wasn't a typo, 20. Her amazing husband is keeping her entertained with his infinite knowledge of movie trivia, and if she's lucky, of few of his acclaimed imitations…She loves that Jeremy, don't let the look of confusion fool you, it's something they call "Chemo brain".
In terms of progress, I wish I had more news. It goes without saying, with 4 weeks of treatment behind us, we were all hoping the oncologist would walk in and say "it's working". Unfortunately, since the tumors are buried within the soft tissue it's impossible to measure progress. For now, we need to sit comfortably in limbo until further notice.
While impossible to know exactly where Nicki is on her journey, all of us would like to share our gratitude for your generous assistance and messages of love and encouragement. With every message she reads I can see her energy shift, please keep them coming.
With 2 rounds of chemo and 7 rounds of radiation down, only 6 rounds of chemo and 27 rounds of radiation to go. Nicki has started to experience some of the unfortunate side effects of her treatment, fatigue, nausea, migraines and loss of appetite…oddly similar to her first few weeks of pregnancy, and we all know how perfect that turned out. Despite the side effects, Nicki remains as optimistic as ever and her " mind over matter" attitude is truly contagious.
Doctor: "There is no scientific data to determine how this cancer will respond to this treatment"
Nicki "Good, then I get to decide"
I love my sister more than ever.
We are so completely touched by all of you. Your love, support and words of encouragement have helped in ways that are beyond measure.
As I said before Nicki's cancer known as Spindle cell sarcomatoid carcinoma of the head and neck or
(SpCC) is very rare only affecting about 7% of the population and treatment is mostly experimental. Limited data regarding SpCC makes it impossible for her doctors to give us an accurate prognosis. As incredibly scary as that sounds her team of doctors at Pennsylvania hospital seem very hopeful her cancer will respond to aggressive treatment.
Starting today, Nicki, will begin chemotherapy concurrent with radiation for aprox 8 weeks. (Radiation 5 days a week /Chemotherapy 1 day a week). The hope is this should reduce the size of the tumors enough to limit the amount of surgery. I will continue to keep everyone updated on Nicki's progress. In the meantime, continued prayers would be greatly appreciated. Thank you, thank you thank you.
I am humbled by all of you. I am reminded of the goodness of humankind and have to believe someone is looking out for Nicki from above. The outpouring of love, support and words of encouragement have given Nicki the added strength she needs to fight. Over the next week we will be discussing Nicki’s treatment plan with the team at Pennsylvania hospital. As the days get closer to finalizing the details, emotions are running on high gear. Nicki seems to be the only one with a firm handle on things and her courage leaves me in awe. My brother in law, Jeremy, has taken on the challenge like a silent warrior and clearly the source of Nicki’s strength. Please keep them in your prayers.