Lessons and Reminders

As we sit here, several weeks post operation, I've had a copious amount of time to reflect on our journey. This journey has reminded me of many things about life and it has also taught me a few things as well. I'd like to tell you that our journey with cancer can be wrapped up, put in a pretty little box and set on a shelf, but that's just not the case. Our journey is far from over. In fact, I don't foresee our journey with cancer ever being truly over. We've learned of some new information that has lead us to do quite a lot of research, which in turn has caused a bit more worry. I'm certain at some point we might begin to let our guard down a little, but for now I've got my fighting gloves on. More on that later.

I've learned that when times are tough, I mean really bad. When you are in the trenches fighting the war, you have to let a few things go. I'm what most of you would consider a 'control freak.' I'm also what many of you would call slightly anal retentive or OCD. My mind works in weird ways and often plans out paths of greatest efficiency. I like to plan things and when things don't go as I have planned, I get crabby. I'm learning. I'm slowly learning that when life throws you a curveball, you might have to drop the reigns and let someone else pick them up for a while. So what if your in-laws folded your laundry and saw your post pregnancy, cesarean section recovery, oversized granny panties? So what if you found your clothes in your husband's closet and his in yours? So what if it meant that your baby ended up wearing a pair of your two-year-old's leggings because they were placed in the wrong drawer? So what if the dishwasher was loaded a little differently and you were unable to find a bowl or utensil because it was put away in the wrong cupboard? So what if your kid was fed candy, chocolate shakes, and carbohydrate filled meals for a few days? All these things sound like they are no big deal. You're right! I was given a big reminder to let things go. Let the small stuff go. I'm a work in progress.

I've learned that science is amazing and there are so many technological advances in the world of medicine. Robots, prosthetics, transplants, medications, testing, the list goes on. I've learned that there are some amazing doctors out there that are dedicated to helping cancer patients. I've learned that science can also be frustrating. In this day in age we (by we I mean I) expect to have a vast knowledge gleaned from research, especially when it comes to diseases and viruses and cancers that have been around for years. I've learned that's not necessarily the case. I've learned that science can be scary, especially when there is an unknown.

Eight years ago, I embarked on a trip. I traveled to 10 countries in 70 days. I visited the homes of people in remote locations, traveled to an orphanage, toured a holocaust concentration camp, walked dirty streets, and saw many parts of the world. Granted, I didn't even set foot in a third world country, but what I did see was eye opening. I vowed to myself after I returned from that trip to do several things. I wanted to be more adventurous, less judgmental, more helpful to others, and less of a faster/cheaper/better American. It reminded me to live life, not just be alive. As time passed, I let those memories fade. As a marriage and children often do (and should), they changed my focus. l've been reminded to live life to the fullest. I needed to reevaluate things and find a better balance. I need to walk a little closer on the line that crosses between throwing caution to the wind and reality.

I've known the word cancer for many years. If my memory serves me correctly, I can remember hearing the word when I was in fifth grade or so. My great grandpa was diagnosed with cancer and passed away from it. Of course, I didn't have a full understanding of what that meant at the time, but now I do. Now, I understand that cancer is everywhere. Cancer is changing the lives of thousands of people every day. Cancer is vicious and holds no remorse. Cancer comes when you least expect it. Cancer makes its mark not only on the victims it chooses, but also their families. I have learned to hate the word cancer and what it entails. I hate hearing of newly diagnosed soldiers, it tugs at my heart strings. One of Patrick's coworkers was recently diagnosed with colon cancer and will go for surgery in a week or so. I hate cancer. Two days ago, I learned of a couple who were both diagnosed with cancer, just 9 days apart (www.friendsofnathanandelisa.bloodspot.com). I hate cancer. When can we find a cure?

Our journey has been a great reminder of who is behind us, who will be there when things get tough, and who will hold our hands. We have a clear view of the family and friends that will call when we are so far down we don't think we can get up. We know who will stop by and drop off food, who will send encouraging words, who will lend a shoulder to cry on. We have a long list (not literally) of people who would come to help at any given moment. No questions asked. I have learned that I can call on people near and far and they will be there to help us. It's reassuring. It's love.

An Update

It's been a few weeks since I've posted. We've gotten back into the swing of things and have settled back into our routine. By no means does that mean our journey is over. It just means things have slowed down, thankfully. Things are going well. Patrick has been back at work for a few weeks and aside from being a little exhausted, he's doing just fine.

His scars are healing quite nicely. I'm amazed at how fast they are disappearing.






His trach hole has been completely closed for a week or so now which is nice as that means he isn't having to change bandages anymore.


Not much has changed in the areas of eating and numbness. Eating is still slower than before and Patrick still has numbness in his neck, arm and tongue.

We've had a few other highs and lows as we continue on this journey. I'm sure I'll share about those soon. Thanks for your continued support.

The new 'normal' is...

...eating slowly.
...only chewing on the right side of his mouth because the left is still numb.
...having a salivary glad that shoots pains with the first bite of each meal.
...having tight neck muscles that limit mobility.
...brushing with a child sized toothbrush.
...wearing a wrist guard while at work to cover the donor site.
...having long scars on his neck and arm that people ask questions about.
...talking with a slight lisp.
...needing to speak loudly because it hurts to speak softly.
...wearing baggier jeans.
...having a crooked smile.
...wearing his watch on his right hand instead of his left.

The new normal is being more thankful than ever before!

Back At Work

Patrick started back at work this week. In fact, he started on Monday, exactly one month from his surgery. So far, he's doing well. Thankfully, his first day back was slow although, you're not supposed to use that word in a hospital. When I talked to him on his dinner break on Monday he had only completed seven exams, which is rare. He mentioned that he had to tell his story because two of his patients had already asked. I asked what he told them. He said he stuck his tongue out at one lady. What a comedian.

Sadly, we didn't get much time to chat on his dinner break that night. It takes Patrick quite a bit longer to eat, so we weren't able to cover much in the four minutes we had.

His second day was extremely busy. Regardless, his energy seems to be fine. I'm impressed, but expected nothing less. He's almost finished with his first week back on the job. It feels good to be back to 'normal.' We have settled back into our routine.

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.