Hi, my name is Nikki and recently, at the age of 32, I was diagnosed with Stage 4 Oral Cancer, more specifically a squamous cell carcinoma in my tongue. I never thought I would use the “C” word to describe myself and I never thought it would just come out of nowhere and completely turn my life around.
One day I was going to the doctor because I had a sore in my mouth and now, I have been not only diagnosed with cancer, but it is stage 4. I have seen more doctors in the last month than I have seen in the last 10 years. And finally, I have found a team ready to embark on the journey to me becoming cancer free.
Since I was 16 I have been working 30+ hours a week. I love working and staying busy. Over the last year and a half, I have been working at a restaurant called Ventures. This place has become my second home and a family to me. I am a very independent, I’m going to do it myself kind of person so reaching out and asking for help is not easy. But I’m smart enough to know that I can’t go through this alone: emotionally, physically, and financially. I am looking at being out of work for roughly six months so not only will I not be able to work but I will also be receiving some pretty big medical bills.
This surgery is no easy task. My cancer not only started in my tongue but has spread to my tonsil, lining of my mouth, jawbone and lymph nodes. I will be having to 3 surgeries at once: the removal, the harvesting of bone and tissue, and the reconstruction. And if surgery wasn’t bad enough the recovery is its own brutal battle. I am told I am going to have a trach and be on a feeding tube, as well as eventually learn how to swallow and speak again. Which will be followed by radiation and then chemotherapy.
So, if you’re still reading along this is my fight for my voice, for my life, and for the happiness that comes with each day. Some may describe me as the sunflower child and it makes perfect sense, they are my favorite and I wear them all the time. But I also like to think it’s because their beauty and strength. I’m going to fight cancer like a sunflower would and even on the darkest days stand strong and look for the sunshine.
All money raised will be used to pay living cost and medical bills while out of work, any left-over money will be donated to someone else fighting or cancer research for oral squamous cell carcinomas.
*******************************UPDATE*********************************
Surgery is scheduled for September 18, 2023
Just completed my last scans!!! Now just pre-op check in and surgery in 10 days!!! I’m excited and nervous and a little bit of everything in-between.
SURGERY WENT GREAT!! 9-18
After a 12 hour surgery I came out on top, quicker than expected. 3 short days later, yesterday, I was transferred out of ICU. I still have a really long road a head of me but I’m continuing to be my strong stubborn self. Already able to walk with a walker and go the bathroom in the commode on my own!!!
MORE UPDATES!!
Doing well being monitored like an infant. I got going to the bathroom and walking down. Started learning how to clean my trach and use my feeding tube today. Pain has been monitored pretty well
A FEW SETBACKS
I now have the worse heartburn again. My white blood count is elevated so they are checking everything out. Got chest xrays to rule out pneumonia and started more antibiotics. Also my jaw is misaligned whether it due to swelling or dislocation its hard to tell at this point. Treating the swelling to figure out the jaw issue.
continueing with face and jaw exercises to help with movement and swelling.
FEEDING TUBE! 9-28
Got my long term feeding tube today. Although its a simple procedure it, it hurts like he’ll. Hoping to be back to normal tomorrow. One step closer to going home.
Oh this morning I walked 4 laps and 2 flights of stairs so I am not free to roam as I please without assistance. I was also signed off by PT and OT.
UPDATES!!!
While the surgery for my feeding tube went well, the pain was more than excepted. While im fine when sitting in bed, moving is worse than the first surgery. I have yet to be able to do laps and earned myself and extra day in the hospital while they try to manage the pain. Im back to using a walker and need help getting in and out of bed. The pain is getting better little by little but it’s been rough. Hopefully going home tomorrow, while I love everyone here taking great care of me it will be nice to get a different view! Equipment is already been delivered and home health has been set up so figures cross I’m breaking out tomorrow.
FREE AT LAST, FREE AT LAST 10-1
It’s official yall, I’m home !!! Everything kinda happen so fast. Woke up feeling good and was able to get in and out of bed, all doctors signed off, took a nap woke up and decided to put on real clothes for the first time and just like that Mimi was there to escort me home. Took about 30 minutes to pack up all the supplies they gave me and then we were out the door. Meant to be more sentimental and take pictures but it was just so surreal in the moment.
And the only thing I wanted more than being out of pain and going home was having my hair wash!!! Still not cleared for regular showers. And again Mimi like my guardian angel made it happen. We left the hospital and drove straight to her friend’s who has a home saloon and I got the best deep hair wash, trim and blow dry. She washed my hair like 4 times I still had iodine in my hair from the surgery, on the plus it’s similar to my hair color so it was like a free hair dye!!
Still not use to being home. Was able to set up the equipment with no problems. ( suction machine for my drool and trach, and air humidifier for my trach to keep everything moist). Haven’t fully unpacked yet but I did geed myself and do my own mess for the first time. Honestly they sent me home with a pharmacy and not much instructions so that took a minute. Then obviously I took a nap!
I just want to thank everyone for all their support so far; well wishes, prayers and donation it has been the biggest blessing. Surgery was just the beginning the real fight is going to happen over the next couple months has I heal and start more treatments. It’s going to be rough! I’m going to get better only to feel worse again but in the end it will all be worth it !! So thank you all again from the bottom of my heart.
FIRST FOLLOW-UP 10-5
My followup appointment went really well !!! Couldn’t be happier. Little by little I am getting rid of all the accessories I left the hospital with. Today I got my last two drains removed, which makes it easier to do just about everything !!! I also got the all clear on my graft sites because they have healed far enough along. They no longer need to be wrapped up tight and can breathe some fresh air now !!! And I got about a week left with my boot but I can start slowly moving around the house without it. However obviously use it for long walks. And an official swallow study is being scheduled which means I’m one step closer to drinking liquids though my mouth and not just my g-tube!!!! I get to start sipping water!!!! Which means I one step closer to pumpkin spice coffee !!!!
I have an appointment with radiation oncology on Tuesday to help figure out next steps, but we are still waiting on some results on the bone they removed and the genetic testing they did.
But for now thing are 100 percent moving in the right direction !!!
RADIATION IS UNDERWAY !!!
Today I did my fitting for my radiation mask. Not the most pleasant experience but it had to be done. Now over the next 2 weeks they will put a plan together and make sure everything is aligned for the targeted radiation. Oct 24th is the dry run, then I pick the time slot and 5 days a week for the next 6 weeks I’ll under go radiation.
SECOND FOLLOW-UP 10-17
It’s a day late but today is my official one month since surgery! And I was finally given the report. They had clean margins from the resection, while the cancer did advance to my jaw bone it did not make it to the bone marrow (which is a good thing), all lymph nodes on the right were normal and only one came back as cancerous on the left. I will be going through with radiation, however chemotherapy is no longer needed.
Everything is healing along just fine. My graft site looks good, my mouth looks good. The swelling is getting better but still has a ways to go. I started speech/swallow therapy. I do my swallow test tomorrow which will let me know whether I can start working with food.
These are all the positive good things and while I’m making great strides there are still some things holding me back and leaving me frustrated. My jaw is still dislocated and misaligned, however they are suppose to be setting an x-ray up to see what’s going on. My feeding tube is still causing me a lot of pain which isn’t typical. I did get it checked out yet again today and it appears to be working just fine and looks good. Unfortunately it looks like I’m one of the few who is just taking longer to recover from it, however if it’s not better in a week they will do an x-ray with contrast to make sure everything is working right. My mouth now grows hair since they used the skin from my calf in my mouth, I was told yesterday that as long as the graft has blood flow hair will continue to grow, so that was fun to hear. No solutions were offered to stop the growth or remove the hair. After starting speech/swallow therapy I became more aware that while my muscles in my tongue want to move my tongue can’t physically move. Originally I just assumed when I saw the stitches on the right side of my tongue to my teeth and the fact the my tongue is almost upside down that it was just sewn that way to move it out of the way because the graft was so big. Turns out that is not the case, my tongue was sewn on both sides to the graft on the floor of my mouth all the way to the tip. And because I have to do radiation it will limit my chances of being able to do a reconstruction or correction surgery due to the scar tissue that will form.
So good news and bad news, while it was frustrating I’m going to keep my head up and focus on what I can do !
RADIATION
Today I officially began radiation. 1 down 29 more to go. I go 5 days a week so my last visit will be Dec 5th. Ill meet with my doctor every Wednesday after my appointment just to check in. Shouldn’t experience systems until about week three but you never know.
Still waiting for my x-ray to get my jaw looked at. So as of now it is still dislocated.And officially started lymphedema therapy, which should help with the swelling in my face. I meet twice a week for that. And speech therapy has also been moved after my swallow study, which I meet for once a week. So thats like 8 visits a week!! Today I have the Trifecta!
RADIATION
Today was my 4th of 30 visits. They said I wouldnt really have any side effects till week three but I’m special. My skin is already looking sun burnt and I’m nauseous almost all the time which is accompanied with a constant headache. Haven’t been able to keep much down even using the feeding tube. Meet with my doctor on Wednesday so hopefully we can find some solutions. Im down another 5 pounds (making 30 in total). Im still waiting to hear what the plan is with my jaw. Its been almost two weeks since they sed they wanted an x-ray, which still has yet to be scheduled. But I’m staying positive. I’m meeting with my first doctor on the 8th and I’ve already reached out to my dentist to see if they would be able to pop it back in place. Another week wont kill me.
HALFWAY THERE !!!!!!!!
Okay so I know its been a while and im sorry for that a lot has been going on. I did meet with my doctors and nothing will be done about my jaw until after radiation is over, so another 3 weeks. My mom has come down from Boston and is staying with me till radiation is over and im doing okay. I have been going through all the symptoms they told me would happen; hair loss, nausea, weight loss, fagtigue, skin deterioration. My feeding tube actually came out at one point and I ended up at the E.R. But everything is back in place now. They were able to change my food which has helped with the nausea. Howver my newly found aweful cough makes up for it. I know cough till I puke sometimes so its been real fun. Im exhausted all the time and uncomfortable even more. The skin under my trach is pretty much gone so its sore and i have to be carefull with it. My face has a rash and tan lines from radiaion and is starting to break down, its not to bad yet. But i may have to stop lymphodema treatment till my skin recovers, which helps with the swelling in my face. And while I will not lose all my hair, i am losing the back bottom half from radiation, I’m thinking of just shaving it. Dont worry I’m talking about the bottom half only. I start physical therapy for my right leg on the 4th to hoefully get some more movement and decrease discomfort.
But other than all the medical stuff, I’ve been trying to go for a walk everyday and teach my mom to understand me. Its not always easy and can be frustraiting but we are doing well. And the rest is filled with naps lots of naps, hanging out and getting ready for the holidays!!! I miss food so much but I did discover I can eat cotton candy!!! And after having no texture in my mouth its amazing. Everything comes to a wrap December 6th which is also my birthday so its a pretty great gift. And we’ll see from there about getting my jaw back in place and if anything can be done to make my tongue more functional, id really like to eat food again.
I RANG THE BELL!!!
Radiation is finally over. Now its time to recover from what it did to my body. I have a 3 month follow up for a PET scan to make sure everything is gone and then the real recovering happens.
once my PET scan is conplete we can start talking about what can be done about my jaw whether is just out of place or they need to fix the graft. We will also talk about cleaning up the graft in my month and reconstruction of my tongue so maybe i can eat. But for now its just another waiting game. If i can pass the protocal i can loose the trach, which means i have to be able to where the cap for 24 hours for 7 days sounds easy but its gonna be a lot of work. Let the training begin.
ITS BEEN A WHILE
Sorry for not keeping up with updating. Sometime in January I had my trach removed, well actually it fell out the day before I was getting tested to have it removed. It was a little traumatic but I was relieved to have it out. Everything instantly felt better; breathing, talking and in general just moving around. Since then I have just been waiting for my PET Scan which I need completed before they’ll reattach my jaw.
PET SCAN
Had my scan done and got the results the following day. It was not the news I was hoping. There is some concern because the base of my tongue lit up on the scan which could mean cancerous cells. So tomorrow I go in for a scoop, meaning they are going to stick a camera through my nose down into my throat to check it out.
FOLLOW-UP COMPLETED
Okay so I had the scope down and everything appeared normal, just a lot of swelling in my throat. I also had my follow up with Dr. Mark. And surgery is finally a GO!!!! They are going to remove the hardware on my jaw and try to get it to fit in the socket. Everything will depend on what they find and if the bone will fit in place. They may need to break the bone, they may have to put new hardware back in or they may have to leave it pliable (loose). But either way it goes the surgery is booked!!! Mark it down April 10th my jaw finally gets fixed after 7 months.
SURGERY!!
Surgery was a success. After a short 3 hour surgery I was being discharged to head home. Compared to my first surgery this one was a walk in the park. To my surprise I wasn’t that swollen and was actually able to talk. My pain was minimal. They removed all the hardware from my jaw and scoped the area to make sure everything looked good. They didn’t see anything so there was no reason for a biopsy.
RECOVERY
After feeling so great right after surgery and being sent home the same day I thought recovery would be a breeze. But over the next two days I continued to swell. My speech became more slurred, and eating was even more difficult. While my neck and jaw felt stiff, I also had a swing in my jaw as my muscles adjusted to my jaw being back in place. My bite went from an under bite to an overbite in one chew, causing my teeth to crack against each other and my molars to not always connect properly. My jaw continued to swell and ice became my best friend. I knew a lot of the swelling was due to lymphedema, but with a fresh incision I wasn’t able to move all the fluid. Eventually my incision ended opening up and a large amount of fluid drained.
2 WEEK FOLLOW-UP
My follow-up appointment went really well. There was no concern about my incision opening and I was actually told to help it drain. And as far as the wiggle in my jaw, that was excepted to some extent. The next step for my jaw would be to have poles mounted and have my jaw banned into place. For now, we are going to wait and see if the muscles tighten up on their own. I was hoping to get my feeding tube out when they brought it up, but they sed I needed to go a little longer without using it before they will remove it. So hopefully at my next follow-up appointment I’ll get that news.
I’ll continue to keep everyone updated and thank you for all the donations, prayers and well wishes every little thing helps.