Thoughts While Waiting and a Surgery Date

A few days ago, Patrick was sitting at the table with our oldest while I was finishing making lunch in the kitchen. We started talking. We were talking about our frustration with getting a date set for the surgery. Then, he brought up the fact that if we had stuck with the original doctor our dentist referred us to, we wouldn't have even had an appointment yet. Furthermore, we would have to wait a week past that day for the biopsy results. He proceeded to say that he probably would have canceled his appointment because the spot seemed to be getting smaller and less irritating. Truly, a hidden blessing that the cards played out the way they did. That we ended up with Dr. D. I gasp at the thought of not catching this nasty disease as early as we have.

As it turns out, all this waiting has had a few benefits. (I never dreamed I'd be able to use that word when describing this journey.) While waiting for appointments, a surgery date, and insurance information we've been able to get our ducks in a row, so to speak. Patrick and I have used some of this time to go over a few household things that will need to be taken care of while he's recovering. He wanted to make sure I was comfortable with all of our finances and knew where certain important papers are kept incase the worst does happen. Not a conversation I wanted to have, but it was the responsible thing to do. Also, with these extra few days, I've been calling on our support system to help with childcare, cleaning, and a few meals. I'm one that likes to plan, so getting these wrinkles ironed out is helpful.

Also while waiting, I've had time to do a bit more research about Dr. D. I thought I was impressed before. My socks about slid off my feet during my last bit of reading on the man. His credentials are outstanding, abilities amazing, and he comes highly recommended. I will now shed a little of the worry I bestow as we approach surgery day. I believe in Dr. D. and know that Patrick will be in good hands.

All of this waiting time has allowed us to confront our emotions head on. I'm certain I've gone through each stage; denial, anger, and now acceptance. Once we passed through the hoop of initial shock, released our anger, and let our emotions flow, we've come to accept where we are. That is not to say that we are happy or okay with being here, but we accept that we are on this journey. We accept that it's going to be tough. We accept that it's going to painful. We accept the emotional toll. We accept that it won't be easy, but we'll come out on the other side stronger. It feels good to accept this journey.

This morning we dropped our oldest off at a friend's house to play while we headed to Dr. V.'s office. Dr. V. is a plastic, reconstructive, microvascular, hand, cosmetic surgeon. If I had enough energy, I'd try to say that five times fast. But, I don't, so I'll keep typing. His list of credentials are long, and I feel confident in his skills and what he does. That coupled with a great bedside manner and I feel like we've hit a home run with our team of surgeons. Dr. V. will be assisting Dr. D. in the operating room. His task will involve taking a skin graft and vein from Patrick's wrist and arm and connecting the tissue to his tongue. While Dr. D. has Patrick's neck open, known as a dissection, to remove some lymph nodes, Dr. V. will connect the vein to another in Patrick's neck so the transplanted tissue will receive blood flow. The appointment today was our last step in the pre operation process. It seems like we've been waiting weeks, when in reality it's only been days, for a surgery date to be scheduled. Now we've got one, thankfully.

Diagnosis date: January 19th
Surgery date: February 7th

Time Machine

If I thought it were plausible and probable, I'd build a time machine. Not to go back in time, but rather forward. I'd like to flash forward to the week after surgery when we will receive the pathology report and then depending on what it reveals, I'd flash forward again either to the end of Patrick's surgical recovery or (heaven forbid) the end of radiation and chemotherapy.

My time machine would allow me to pass through some difficult moments. Moments that I am trying to mentally prepare myself for. Moments like watching Patrick being wheeled away as he is taken to the operating room. Moments, or rather hours, when I will be waiting in the waiting room for updates or news that the surgery has been complete and everything went well. I would like to fly through the moment when I will walk into the intensive care unit and see him for the first time post operation when he will be engulfed in tubes and wires. A moment when I will see his battle wounds for the first time, I could do without. I would take joy in passing the moments where I will be waiting for him to wake up. If I had a time machine, we wouldn't have these moments. We'd be at the end of this journey looking back and relishing in how strong Patrick was and how amazing our support system is.

If I had a time machine, I'd like to pass the moments when I'll see him laying in the hospital bed or on our couch in pain. I'd pass through the moments of never-ending uncertainty, those in which Patrick will be questioning every bump, discoloration, and swollen node. I'd pass through the moments of awkwardness when people notice there is hair growing on his tongue due to the skin graft taken from his arm, because it will most likely happen. If I only had a time machine.

My time machine would let me stop to see the great moments over the next few months that we don't want to miss though. Once we open our eyes for a quick peek it would then start again so that we can pass the difficult ones. We would stop for the time when our youngest, nearly a six month old babe, decides she'd like to roll over. We'd stop when our oldest sees fit to finally go poop in the potty one hundred percent of the time. A milestone worth celebrating. We'd stop when our babe is going to taste a flavorful pureed glob of goodness so we could watch her smear it all over her face. We'd stop to watch our oldest learn and master a few more letters of the alphabet and take pride in her ever-growing desire to learn. For those moments, I'd ream on the brake lever in the time machine.

I've never been one to have an overactive imagination. Truly, I've never been one to have an imagination, period. I had a hard time playing with Troll dolls and My Little Ponies in the schoolyard at recess and thinking it was fun. But, today, I think I will light the pilot light that feeds the fire to my imagination because I'm really thinking a time machine would serve me well.

Until this time machine builds itself, because let's face it, I'm no engineer, I'll be waiting for Dr. D.'s office to call and confirm the tentative surgery date. A time machine would really improve this journey.

Brain Dump

Before I was blessed enough to become a stay at home mom, I was a fourth grade teacher. I would often tell my students to open their journal and 'brain dump.' The reasoning was that by writing down whatever came to their mind they could become inspired to write about something, or clear their mind for another great idea to enter. As I process all of this information, I feel the need to brain dump, to get my thoughts out on paper (or rather the computer screen). I need to clear some space.

I've mentioned before that I am amazed at what science has to offer nowadays. While reading through a packet Dr. D. gave us I came across many interesting things, but the one that stood out about the surgery was they there will be a surgical robot used. Prior to using this robot they had to fully cut through the jaw, a straight line down the front center. Now, they use the robot to maneuver inside a patient's mouth. Of course, Patrick already knew about this, but it was news to me.

The other night my oldest sister texted me and said when all is said and done, we are going to have a 'look at me, I'm cancer free' party. I was excited about the idea then I thought about it for a few minutes. That party is three years away.

We're going to have to share the news with our oldest daughter sooner or later. She understands more than most two-year-olds, so she'll understand that daddy is 'sick.' I think the most difficult part for her will be not being able to see him for several days.

Amongst all the craziness of appointments, diagnosis, and emotions, I completely was unaware that I was not sharing all the messages of support we are receiving with Patrick. I've got messages to relay.

We've been reading other cancer patient blogs and websites. Some are sad and some are inspiring. Seeing pictures of the aftermath is eye opening to say the least. The battle wounds are prominent and remind me that this is going to be a painful journey for Patrick.

This blog has been therapeutic for me, and I like having our journey documented. I know that I will not be able to remember dates or particular information if I'm asked in two weeks, or next year for that matter.

So many of you have told me that you'd love to help out. Many thanks for the offers and support. While I will call on several of you for help in the next few weeks, there is one thing besides praying that all of you can do for me. Take notice of your body and see a doctor if you find something odd. The reason we are in the best of the worst is because Patrick did just that.

I'm learning new things about our body and cancer everyday. Tongue cancer is rare in that it can grow without pain. Another fact... More than 10,000 Americans are diagnosed with tongue cancer every year.

Emotional exhaustion is, well, exhausting. A variety of emotions flood through each day. It's been 24 hours since I last cried. I'm not crying anymore because of the unknown or out of fear of how this journey might have ended, but rather because as I learn more about the procedure and recovery (heaven forbid radiation or chemotherapy are included) I am sad that Patrick will be suffering. Patrick, on the other hand, is in a much different place. Maybe he'll share at a later date.

We're expecting a call from Dr. D.'s office within the next day or two to schedule the surgery date. Until then, more waiting. A journey full of waiting.

The Plan

We saw Dr. D this afternoon. I feel really good about where things are and where they are going. If I had to sum up my thoughts I would say we are in the best of the worst. By that I mean that we are dealing with cancer, surgery and recovery, but from where things stand right now it seems as though we caught this nasty disease early. For that I am thankful beyond words.

The plan...Within the next 2 weeks, Patrick will have surgery. During surgery they will do several things 1) Remove about 1/3 of his tongue 2) Remove his wisdom teeth 3) Remove several lymph nodes from his neck 4) Graft skin and a vein from his wrist and arm and use it to reconstruct his tongue

Science is amazing! I am in awe at what they are able to do. This is not Dr. D.'s first rodeo and that is very apparent. He sat across from us in an exam room and spoke to us as though we were around a coffee table. He took his time and explained everything. He patiently listened to our questions and gave answers. And now, I will do the same for you.

Why take out Patrick's wisdom teeth?
For two reasons. Having wisdom teeth in makes the jaw more weak. Having another surgery to take them out makes the jaw weak. We need Patrick's jaw to be at its best incase he ends up needing radiation therapy. Radiation breaks down teeth and jaw bones. Plus, if Dr. D. extracts them while performing the other surgeries he will deposit a mixture of blood platelets and bone particles in the socket before closing it up which leads to very rapid healing.

How will they remove the lymph nodes and how many?
We have about 700 lymph nodes in our body. 300 of them are in the neck and above. Dr. D. will make an incision along Patrick's neck from one side to the other. He will remove several (approximately 20) lymph nodes and a salivary gland.

Will Patrick have radiation or chemotherapy?
Maybe. We will not know until a week after the surgery. The lymph nodes will be tested for cancer and if the pathology report comes back positive Patrick will undergo Radiation therapy for six to seven weeks with the possibility of intermittent chemotherapy.

How will the skin graft work?
Dr. D. will work along side another doctor in the operating room who will attach the vein and skin taken from Patrick's arm to his tongue. It will immediately receive blood flow. The skin will appear white, but over time will take on a pink tone like the rest of his tongue.

What about recovery time?
Patrick will be in the hospital for 5-7 days. The first two days after surgery will be spent in the ICU. After that, he will spend another 2-3 weeks recovering at home. He'll have an NG tube or feeding tube for about two days after the surgery then will start a liquid diet. Talking will take some time too. He will be hard to understand at first, but as the swelling goes down, it will become more clear.

Why Patrick? What caused this cancer?
We do not have an answer to that. Dr. D. said tongue cancer is becoming more common in young men and women. Young men and women who do not smoke, chew or drink alcohol. He said he did not think it had anything to do with Patrick's occupation (radiological technologist).

Did I forget anything?

So, processing all this has been difficult to say the least. Surgery day will be bittersweet. The cancer will be gone, but recovery will start. Patrick will have scars. Scars that will forever be a reminder of this journey.

Now What?

After we let the diagnosis ring in our ears for a few minutes we rallied. We talked about the next step. Dr. D. told Patrick that he wants to remove a portion of his tongue, the lymph nodes in his neck, and then reconstruct his tongue. He also told us that Patrick should head to the hospital to get a CAT scan to see if the cancer had spread to other parts of his body. One step down, one to go. The scan could deliver more devastating news or a glimpse of hope in that the cancer had not metastasized. Ironically, the request was faxed to the very department Patrick works in at the hospital. His coworkers and friends would be performing the scan.

We informed family and friends and were showered with supportive phone calls, texts, and emails. Everyone promised to keep us in their thoughts and prayers. We were appreciative. He left for the appointment and planned to stay after to work his regular shift. He takes his role as a provider very seriously, something I truly admire. Although, it was probably best for him to be at work to keep his mind off of things, it was hard to let him go. He told me that I didn't need to be there for the scan and that I should stay home with the girls while they napped.

Patrick had a soft tissue neck scan with contrast three hours after we received the initial diagnosis. Once again, we waited. The system where the images go to be read went down minutes after the images were sent. More waiting. The images were read by a radiologist off-site. Dr. F. called Patrick several hours later and gave him brief preliminary results while trying to be vague. In the report she used several multisyllabic medical terms. Words that translate to mildly inflamed lymph nodes, not necessarily due to cancer, and the lesion on his tongue was difficult to see possible due to obscurity (read: fillings in his teeth). I considered this good news. The blaring (metastasizing cancer) sirens were not going off.

Another two day wait left ample time to let things really start to settle in. Cancer. I know that Patrick will survive this journey because he is strong and has so many people supporting him. What I also know is that this is going to be a difficult journey. One that will leave scars, physically, emotionally and mentally. No one wants to see their loved one endure what Patrick is about to go through. But I will do it. I will do it because I love him. At this point, I most fear the physical pain he will suffer. Thankfully, we have our two beautiful daughters. They truly are like medicine. I am sad they have had to see us get upset, but thankful that they are young enough that they will not remember these days. They will not remember this journey.

Today, Friday, we will meet with Dr. D. to discuss CT results, surgery and later treatment. Our list of questions is getting longer. We hope to leave there with a plan of action. A plan that will lead to a quick end to this journey. A journey that ends with Patrick's health restored.

Diagnosis

We are too young for this journey. No, I don't think there is ever an age when this journey is easier, less scary or painful. That said, this is our story. The story of Patrick's diagnosis, treatment and beyond. The story of a non smoking, non drinking, 30-year-old being diagnosed with Squamous Cell Carcinoma of the tongue.

It all started when Patrick mentioned that he had a spot on his tongue that was bothersome. He thought it was from a sharp tooth he had, so he suffered through for a few weeks before deciding to call the dentist office to make an appointment to have the tooth ground down. It was a Monday. He went to the appointment and came home. The girls and I were sitting in the family room playing on the floor. He said he had some good news, and some bad news. No cavities. But, the dentist referred him to an oral surgeon to check out the spot on his tongue. He continued to tell me that the dentist told him that 90% of the time the results come back as Cancer. Two days passed. I was in extreme denial or rather maybe I was just uninformed. Until then, I had no clue there was a bump, I thought it was just a scrape we were dealing with. The original oral surgeon we were referred to was not 'in network' under our insurance, so Patrick made a call and found some other doctors that were. I called and made an appointment. He would be seen two days later, a Friday.

Meanwhile, Patrick had done some serious research on Google. He started sharing some facts with me and I told him I really didn't want to hear them, and that we should stay positive. They were negative, sad, and did not have the outcome in which I was praying and hoping we would have. As this whole Cancer idea started to sink in, I kept the hope in the back of my mind that maybe the lump was benign and it would just go away on its own. We were not that lucky.

On Friday, 5 days after he saw the dentist, we dropped our oldest off at a friend's house to play while we drove to Gresham to see the oral surgeon. We waited, filled out paper work, and waited some more. We were told that the doctor Patrick would be seeing was not covered by our insurance. The other doctor in the office was, but he was not in. We opted to pay the extra $35 out of pocket as our concern was growing and we wanted some answers. Patrick's name was called. He headed back and had a full panel of X-Rays taken. I sat in the waiting room and rocked our youngest to sleep. She laid on my chest, and I waited impatiently. Then, the secretary told me that we would be heading straight over to a Head and Neck surgeon and that visit/doctor might not be covered by insurance, but we might not have a choice. My heart sunk into my stomach and I felt helpless. She looked at our sleeping baby and mentioned that children are the best medicine. She knew something we didn't. Patrick came back out and I could see the sadness and fear in his eyes. We spoke with the secretary one more time and left. We hugged in the entry way of the medical office building, speaking volumes without words.

We arrived at the second doctor's office, where we waited for over an hour. I nursed and rocked Harlow to sleep one more time and held her. Patrick was called back. I waited some more. My phone's battery was barely charged, I was trying not to move to wake the baby, so I stared and thought. Thought and stared. Still trying to be optimistic, but keeping in mind we had heard 'cancer' from two doctors by this time. Patrick sent me a text; Going to do biopsy. May have to wait just a bit...Biopsy results take about 5 days to come back.
More waiting. We left with another appointment scheduled and the understanding that if the results came in before then, the doctor would call.

The doctor did call. Wednesday, January 19th at 10:24 a.m. I was stepping out of the shower and I heard, "I don't think so. It's just a lot to take in." I turned the corner and saw Patrick on the phone. It was confirmed. Carcinoma.