Brain Dump - Fourth Edition

I still feel a small cringe every time I tell someone of Patrick's story for the first time. Typically there are two questions that come shooting down the barrel immediately after I relay the story. How old is he? Did/does he chew or smoke? I feel like I need a business card with a general synopsis of the story written on it and then in bold at the bottom it would read: 30 years old. Never smoked. Never chewed.

It's odd how this journey has put some things in perspective. Actually it has put many things in perspective. I find it hard to complain about hitting my not so funny bone, stubbing my toe or getting a paper cut. If you look at the face I'm most likely to complain to, you'll still see battle wounds that remind me that the ever so small incident that just occurred is nothing at all really. In comparison at least.

It seems like each day I get a phone call or read an email or some Facebook post that mentions another soldier fighting this battle we call cancer. It breaks my heart that children, mothers, grandpas, uncles, aunts, cousins, friends, coworkers, so many people are on this journey. Their own journey with cancer. Just tonight I heard of a 31 year old, soon to be father, athletic man and his recent diagnosis and treatment. My heart breaks for these people and their families. I will forever be so grateful that we caught this nasty disease as early as we did and albeit difficult, our journey could have been so much worse.

I'm tired. In fact, I'm tired of being tired. I know. Perspective. It could be worse. Our youngest has developed the never-ending tummy problems our oldest once had. It took her 15 months to grow out of and as it looks now, I've got another 8 months or so of sleepless nights. On top of that marvelous phenomenon our babe has another cold. To sum it up, I've got a seven month old with a stuffy nose, awful cough and tummy problems. I'm tired.

I've received a ton of positive feedback about this blog. As I've mentioned before, it's been therapeutic for me. It has helped spread the word about being aware of your body. It has informed the masses er our friends and families about the details of our journey. It has been the medium through which we have met other soldiers. It has shown many of you what the face of cancer can look like. What it has also done is take away Patrick's voice. It's taken away his chance to tell his story. Everyone he talks to has read the blog, so everything he says is old news.

I'm still wearing Patrick's wedding ring.

I mentioned in a previous brain dump that I want to help fight the cancer fight. I'm thinking that helping involves spreading the word about how many people are affected. I'm thinking helping means informing people about what the face of cancer looks like. I'm thinking helping means softening the blow for newly diagnosed soldiers, if that's even possible. I'm thinking maybe writing a book would be a good way to help fight the fight. Or, maybe I'll keep thinking.

More Post-Op Appointments and a Work Release

Patrick had two more post-op appointments this week. Dr. D. gave us two thumbs up and was very pleased with how things are going. In fact, Dr. D. gave Patrick a release to go back to work, a full duty work release to be started next week. Dr. D. and I both told Patrick that he didn't need to try and be a hero and could take a few more days if he wanted. But, Patrick is anxious to get back to the grindstone. Maybe not so much the going to work part but being able to get out of the house and see people part. The only concern Dr. D. and I have is that Patrick will be fatigued and wiped out after his time off. And, with his body still recovering it is already working overtime. We won't be going back to see Dr. D. for two months.

We had an appointment to see Dr. V., but he was stranded with a flat tire, so Patrick was seen by Dr. V.'s PA. He too was happy with how things are going. He talked with Patrick about some of the nerve issues and just like Dr. D. he believes it will continue to get better over time. The PA looked at his tongue and asked about going back to work. He told us to call if there were any issues with his tongue between now and our next appointment, or if Patrick felt too wiped out after returning work and wanted to scale back. We'll go back to see Dr. V. in a month.

Here's to continued recovery and future health.

The Journey For Our Oldest

Naturally, our oldest has been more affected than our youngest during our journey. Although she is 26 months old, she understands so much and has dealt with everything in her own way. Before she knew anything about what was going on, she caught me crying. I did my best to contain myself, but one afternoon I let my mind get the best of me. At the time we knew very little about how difficult our journey would be or how it would end. She saw my tears and came up to me, wrapped her little arms around my neck and said, 'it will be okay mommy.' She kept repeating herself until she saw I stopped the waterworks.

Patrick first told her what was going on the day before the surgery. She was told that daddy had an owie on his tongue and that he would be going to the hospital so the doctors could fix it. After repeating this story three times, she had a general idea of what was going to happen. The night before the surgery, my older sister picked her up for a sleepover. It was a sad moment. Patrick was upset because that was the last time he would see her before the surgery. Her leaving meant no more last minute cuddles or snuggles or chances to say 'I love you.' It was quiet in the house.

The following morning she was brought back home to stay with my oldest sister and our youngest. As the days passed, we tried our best to keep the girls on their normal schedule, but of course a small change here and there was bound to happen. I think this coupled with me being gone so much was a bit more than she could handle. She started doing things out of the ordinary like spitting and hitting. She was far more whiney than ever before and craved my attention whether I was present or not. As the week went on the negative behaviors increased and it was very apparent that she needed me. It became very difficult for me. I felt very torn. I wanted to be at the hospital for Patrick as much as possible and I also wanted to be there for my girls. I know that neither of them will remember this journey, but being present and in the moment is something I really strive for.

The Friday Patrick was released from the hospital and we headed home my aunt was there with the girls. I called her to let her know of the plan as I wasn't expecting to be home so early. She was headed out the door to take the girls on a walk. It was perfect timing. I wasn't sure it was a good idea for the girls to be there when we first arrived. I didn't want our oldest to run and jump on daddy. I didn't want her to cling to me and me not be able to get Patrick settled. Soon after they returned and I took her to the living room to see her daddy. She was hesitant, kept her distance and was unsure. She didn't stay long.

Each day our oldest would get a little closer to her daddy. Each day she would talk to him a little more. As the days passed she became more comfortable and started to cuddle with him again. As she spent more time with us, and was able to get back on her schedule, the negative behaviors started to decrease.

Now, after weeks have passed if her daddy is not in the room she'll ask where he is. Before I can answer she'll ask, 'Is daddy at the hospital?' If I ask if she wants to go to her auntie's house to play with her cousin she replies, 'so you can take daddy to the doctor?' Her mind is a steel trap. She doesn't forget a thing. On any given day you'll find our oldest using the plastic rim of a net as a stethoscope. She'll listen to your heart and say, 'lub dub, lub dub.' She likes to take your temperature and listen to your lungs too. And the sweetest thing of all is when she asks her daddy if she can kiss his owies.

Our Journey in Pictures

This post is our journey in pictures. If you have a sensitive stomach, I don't recommend looking. Although, it's much easier to see these pictures than it was experiencing it in real life. Many of these photos were taken with the camera on my phone, most often because Patrick wanted to see what he looked like or what his scars looked like. On the morning after his surgery, he desperately wanted a mirror. All I had to offer was a compact, which was extremely small, so we took photos with the cameras on our phones.

I have experienced a lot of firsts over the past several weeks. One of them was seeing Patrick without facial hair. We'll be married five years in July and I've not once seen him without it. Here he is waiting in the Day Surgery room. This is where he was given an IV. This room was where each doctor met with us before the surgery took place. This was where the chaplain prayed with us. This is the room where reality really sank in. This was where I said, 'I love you' before he was wheeled away.

After the eight and a half hour surgery and emergency tracheotomy Patrick was wheeled to the ICU. The Intensive Care Unit is where I first saw him. It's where he laid with an extremely swollen tongue, a ventilator, tubes, wires, bandages, blood, a feeding tube and what seemed like everything else you'd find in a hospital. I sat with him for several minutes and held his hand. This is where I shed a few tears out of sadness. When I took this picture I told him that I was doing it for him, not that he heard me, but oddly, it made it less awkward. This is where he tried to wake up. This is where he was given a bolus to force him to rest. This is where he lay all night until I was able to see him again.
While still in the ICU he got up and walked around and sat in the recliner in the room. The recliner is where he sat trying to stay awake because sleep meant he might choke on another blood clot. The recliner is where he wrote 'pass out,' which made me dart out the glass doors to get his nurse.

During Patrick's operation, they inserted an NG (feeding) tube. There is a weight on the end which helps it find its way down to the stomach. Normally, they do not stitch them in, but for Patrick they did. Here is his tongue one day after the surgery. You can clearly see the flap and stitches which by the way are still in his mouth to this day.

The massive incision on Patrick's neck that strings from below his left ear to the other side was stitched with numerous sutures inside and out. There was a drain placed in his neck which led to a Jackson Pratt (a plastic bulb) which was emptied every few hours or so.

Once awake and breathing on his own, a warm air humidifier supplied air to the trach sight. The tube is held there by a mask and rubber band type apparatus. Due to the constant stream of blood from the tracheotomy, we tried to keep a washcloth there at all times. Many times a day I would change it out and wipe his chest with a warm cloth to remove any dried blood or pool of blood that had settled. Due to surgery, Patrick had a lot of gunk in his lungs. Gunk his lungs didn't want. He would cough and gasp for air. He, or I, or my sister would use a suction tube to help him clear the blood or clot.
After two days in the ICU, Patrick was to be moved to a room on a floor. He was helped to the recliner while the new bed was wheeled in. After being awake for so long out of fear and having so much medication on board he immediately conked out once helped onto the new bed.

The Thursday following surgery Dr. C. and a resident changed out the trach for a smaller, metal version. This version allowed him to talk and breath easier. After they stepped down the trach, the hole required two stitches. This is the trach they plugged for a while in the evening when I wasn't there. This is the trach that they plugged all night which led Patrick to feel so much better that he started joking and smiling. Once they put the plug he he said, 'I can breath. Now that's blog worthy.'

Patrick's arm was the donor site for the flap that was used to reconstruct his tongue. Here is what it looked like four days post operation. The mark in the lower left of his arm is where another drain was placed.
Here is the donor sight 11 days post operation. The skin is still see through like a window. You can see the tendons in Patrick's arm. We are told the line trailing up his arm will slowly disappear. His arm is still causing a lot of discomfort due to tight tendons and bothered nerves.
Here is the trach hole 12 or so days post surgery. It seemed to be closed then opened again after the stitches were removed, then again after he slept on his side last night. We are really hoping it closes for good soon as he does not want any other stitches.
The skin graft taken from his left leg was used to cover the donor site on his arm. It has since scabbed over and sloughed off. All the remains now is a red square. In time it will heal, but will remain discolored.
Patrick's tongue is healing nicely. There have been a few concerning moments after eating something or accidentally biting his tongue. The swelling has significantly gone down. His speech is becoming more clear, but he still has a lisp. Immediately following surgery and for several days after the flap appeared pink in color. Now it has taken on a white tone.

The incision on his neck (taken yesterday), has improved so much and each day looks better.

And the journey continues...

Two Weeks Post Operation

It's hard to believe it's been two weeks since Patrick had his surgery. Just two weeks ago, I said, 'I love you' and he was off to the operating room. Just two weeks ago I saw him in the ICU post operation engulfed in wires and tubes. Now, here we are two weeks into recovery and things are going fairly well.

Patrick is no longer taking any pain medication be it narcotics or over-the-counter. He hasn't for several days now. He is still taking the recommended aspirin to help with blood pressure and to prevent blood clots.

There are several main obstacles Patrick deals with on a daily basis. Not being able to use his left arm is one of them. He has limited mobility due to tight tendons and sharp pains, or 'fireworks' as he refers to them, shooting up his arm. The scar trailing up his arm will drastically decrease over the next few weeks. The flap removal site, now covered by the skin graft will start to thicken so the tendons won't be visible. The skin will always be discolored. Just a few more days, and Patrick can take the wrapping off. He is planning on purchasing some sort of sleeve or wrist guard to wear to protect his arm while at work.

The hole where the trach was is still slightly open. It seemed to be closing and had no air passing through, then the two stitches were removed and Patrick can hear some gurgling, bubble noises. We are hoping it continues to close and heal as he does not want anymore stitching. Once healed, Dr.V. offered to fix it if the trach scar is bothersome when turning his head or talking.

As I've mentioned before the scar on Patrick's neck continues to heal nicely. I've noticed a big difference since the stitches were removed a week ago. It has and will continue to lay down and over the next year will become part of the crease in his neck and rather unnoticeable to strangers. It's difficult for Patrick to hold his head straight and level. He said it feels like they detached the muscles in his neck and reattached them as they are tighter which makes it difficult to not tilt his head to the left bit. I'm sure that coupled with the tightness of the incision are what bother him. He jokingly calls himself Quasimodo.

Eating is still a slow and steady race. Patrick regretfully tried a cheeseburger several days ago. It went down fine, but seemed to irritate his throat. After several more days of consuming soft foods, he tried pizza. It took a half hour to eat, left some concern about the stitches in his tongue, but made it down the chute. He's down 11 pounds, but as he continues to be more brave with eating, we hope he's hit the bottom of weight loss.

Patrick is experiencing a lot of numbness in his face, neck, ear, tongue and thumb. Although, it is completely normal, it is rather annoying and can be bothersome when doing things like shaving.

The flap attached to Patrick's tongue is doing well. A few of the stitches have come out leaving a bit a crevasse is some places. There is a spot on the bottom of his tongue that has grown a few hairs. We'll be looking into permanent hair removal in the future, but for now it's just part of the journey.

Have I left anything out? Any questions?

Stay tuned, the next post will contain the pictures of our journey thus far.

Post-Op Appointments

Patrick had a post surgery appointment with Dr. D. on Monday. We left the girls home with my mom and made the trip to the big city. After checking in and a short wait, Patrick was in the examination chair. Dr. C. came in and took a look in Patrick's mouth and mentioned that everything looked good. He also said that the swelling would continue to go down then he removed the stitches in Patrick's neck. Just a few short minutes later and Dr. D. came in and did a quick scan of Patrick's tongue too. He said he was pleased with how everything was going and that they had talked about Patrick's case over lunch today. The cancer board all agreed that there was no need to continue with any other treatment. Another confirmation that chemotherapy and radiation are not necessary. Do we know if there are any cancer cells left in Patrick's body? Sadly, no. What we do know is that for now the stage two cancer we've been fighting since the diagnosis on January 14th seems to be at bay. I wish I could record Dr. D. as he speaks to us. The way he phrases things is perfect. Dr. D. said that over the next several years Patrick will be getting regular scans be an MRI, CT, or PET scan. At first every few months then every six months, then once a year. We will be going back in two more weeks for another post-op appointment.

Today, we saw Dr. V. who was also pleased with the way things are going. He lowered his surgical glasses, grabbed a light, and took a look at Patrick's tongue. Once done examining the flap, he removed the bandage from Patrick's arm and took a look at the donor site. He poked and prodded a bit and told us that the scar trailing up his arm would greatly improve over the next few weeks. Dr. V. also mentioned that although the flap site would remain discolored it would heal up nicely. There were a few stitches placed in Patrick's neck when they stepped the trach down to the smaller, metal version. The stitches were not ready to come out when we were at Dr. D.'s on Monday, so Dr. V. took them out. He mentioned that the scar on Patrick's neck would take about six to eight weeks to start to smooth out and lay down. Lastly, Dr. V. and his PA took a few pictures of Patrick's tongue. I'm not sure if the pictures were for his personal library or for the new patient of Dr. D.'s that was recently diagnosed and will be traveling the same journey as Patrick. My heart goes out to him.

We left with another follow-up appointment and ventured up the freeway to the hospital where Patrick works. We were surrounded by his imaging family as he told of surgery and recovery. They were all so pleased to see him and I was proud to stand there as he described his battle. He felt the support and looks forward to being back at work. Depending on how his recovery goes, Patrick will tentatively be heading back to work after the first week of March. It seemed like all we were doing before was waiting, and now it seems as though time is flying by. I'm grateful for that as the faster time flies, the faster we are done with this journey.

Thank-You

Since the moment we learned of this journey, we have been showered with love and support. Emails, comments on the blog, texts, Facebook posts, and phone calls expressing concern and encouragement have poured in. Thank-you. Supportive family, friends, acquaintances, coworkers, and people we've never met opened their wallets and gave donations and gift cards to grocery stores, gas stations and restaurants. Thank-you. A prayer quilt was delivered and we were added to numerous prayer lists. Thank-you. Three trailers of yard debris from a recent pruning of a large tree in our yard have been taken away. Thank-you. Several meals were made and delivered. Thank-you. Groceries have been bought, and our house was cleaned. Thank-you. A sandwich was delivered to me on surgery day, books and magazines too. Thank-you. Childcare, laundry, and errands were all taken care of without question. So much done for us in our time of need. Thank-you. A cherry pie (his favorite) was made and delivered to Patrick before surgery. Thank-you. An oral cancer book was sent by another survivor, a man we feel like we know but have never met. A second book about fighting cancer was mailed to Patrick. Thank-you. Balloons and flowers were delivered to the hospital. Thank-you. A continuous flow of cards arrive in the mail. Thank-you. All of you have been so generous, helpful, kind, loving and supportive. Thank-you doesn't begin to express our gratitude. As we continue on our journey of recovery, thank-you for helping guide and support us.