Getting Back to "Normal" Life

It has been almost two months since Pat's surgery and everything is going really well. Pat continues to regain energy and is almost back to 100%. He has had 2 follow-up visits with his doctor and they say everything is looking great! He goes to the doctor every month for the first year, every two months for the second year, every three months for the third year and so on for 5 years. The big milestones are the 3 year and 5 year cancer free anniversaries. At the 3 and 5 year mark the chance of recurrence goes down dramatically. It seems like such a long time from now, but we look forward to reaching those big dates and celebrating!

Pat has been doing physical and speech therapy for a while now. Both have really helped, but are an ongoing duty. Due to the neck surgery, Pat's shoulder is strained and weaker than before. Every morning he does some exercises with a stretchy, elastic band to build strength and regain movement. It still may be a while before he can swing a golf club, maybe by spring. His speech is great, just a little slurred with certain words. The doctor said it should be back to the way it was before in about a year.

Patrick is back to work 30 hours a week. His schedule allows him to get a little more sleep, he still needs more rest than usual. I went back to work full-time with my former employee in San Francisco. I am thrilled to have a job again and it is fun to be back with old co-workers.

Over the last few months we have become involved with a wonderful support organization called The Wellness Community. http://www.twcba.org/ We both addend weekly support groups and have received a lot of support in going through cancer and address some issues with moving on from cancer. We have met some great friends. Most of the people there are 15+ years older than us, but we like being the youngins and it feels good to chat with people that have been in the same boat. It is alarming to realize how many people are affected by cancer. Most of all we are shocked to hear about how many more young people are being diagnosed. We hope someday there is a world with out cancer, but until then we are thankful for our super smart doctors and places like the Wellness Community for providing support. : )

Hope this blog finds all of you well. xoxo

Great news!

We got the pathology report back today and the conclusion is that no radiation is necessary! Officially Pat is cancer free!

The details...a little confusing, I'll do my best. The cancerous tumor was 1 centimeter in diameter on the surface of the tongue. In surgery they remove the cancer and suspicious areas and then the they removed 1 centimeter beyond that. The lab results show that they got all the cancer out and that the distance between any cancer cells and healthy tissue was 6 mm. If the distance is less than 5mm they usually recommend radiation. The lymph nodes and tissue taken from Pat's neck came back clear of cancer - which is really great. It shows that the cancer had not moved past his tongue. (See above for my attempt at visual representation - this is our interpretation of the info the doctor gave us today. View is as if you are looking in Pat's mouth - not to scale : )

Pat continues to do great. His speech is a lot better that I thought it would be. He is still in need of speech therapy, but I think he will do great. Eating solids is still a little challenging and painful. He powers through his meals and although he takes about 3 times longer than me to finish a meal, he eats it up!

Thank you for all your thoughts and prayers!
xoxo

Good Riddance to the Bolster!

Picture from today & Picture of Pat on on day 3 in the hospital with the bolster, staples and drains - all gone now!

The bolster was bothering Pat so much that we went to the doctor today and had it removed. Yay! It was so big that it was rubbing on the back of his throat and it got to a point where he was having a hard time eating. He also was taking a fair amount of pain meds just because of the discomfort caused by the bolster, so we decided that he could not wait another two days to have it removed. We went in around 1:30. The bolster was stitched to his tongue and took some maneuvering to get out, but after a minute or two it was cut free - in all its grossness it was discarded. Pat has not been able to close his jaw since the surgery and now with the bolster out of the way he is relieved to have his jaw movement back. They also removed the staples in Pat's neck - 20 of them. They came out easily with a small scissor like tool. Pat officially has no more additional items in his body - tubes, gauze, staples etc. They are all gone and he is 100% Patrick! His doctors said he looks great, tongue and all. To us his tongue looks different, which was no surprise. The top of the tongue is mostly still there, it is the underside on the left half of the tongue that is gone. There is a void like space in his mouth for now that makes it hard to talk, drink and eat. In a few weeks the tongue muscle should relax and fill in some of the space.

On our way home from the doctor we got a Jamba Juice. Peanut Butter Mood it Pat's favorite calorie/protein intake smoothie- we don't recommend it on a daily basis. It has 850 calories and 45 grams of protein and is filled with sugar! For dinner Pat tried some semi solid food for the first time in a week and a half. I made some bland and healthy chili and he was able to eat it - it took a while but he did it!!

We are hoping it is all uphill from here. We are waiting for the pathology report which we should get back sometime this week. Thanks again for your positive thoughts! We'll keep you posted! xoxoxo

Pat Here

Hey everybody - Pat here. Just want to be first on record to say that Molly is the greatest wife ever and I'm in totally capable hands. We laugh a lot which really helps, and for some reason she understands everything I say which is fantastic. I'm pretty sure it's borderline telepathy. I also want to thank ALL of you for the amazing support over the past month and a half since we started this journey. This has by far been the most challenging time in my life and I definitely hadn't planned on being here shortly after turning 30 years old. All of the cards, flowers, dvds, magazines, books, and most importantly thoughts and prayers mean so much to me. I am truly blessed to have you all in my life.

Update from Home - Saturday, October 4

We have been home now for 4 days and pretty much been watching funny movies, reading and resting (Pat throws in a little meditation here an there these days). It's pretty simple, the food options are soup, smoothie, soup or smoothie - we try to hit the recommended 105g of protein and 2,400 calories a day on a mostly liquid diet. It is not exactly tasty seeing as we add whey protein powder and flax oil to everything. Yesterday we went to see a movie (Nick and Norah's Infinite Playlist). We are 30 years old, but we still enjoy a inappropriate high school movie - especially when you can beat all the teens to the theater, we went before school was out - ha! Pat has a good amount of energy. We try to go on at least a short walk everyday. Yesterday we went on two longer walks around our neighborhood.

Although his energy is up, it's been a tough week for Pat, he's in great spirits but I'm pretty sure he's never felt this vulnerable before in his life. It's frustrating for him that he can't talk that well right now (can't be understood is more like it). There is also the pain - which has been getting better but still persists. The neck incision looks great. Dr. Schmidt did a great job. Pat still has some swelling in the neck along the left jaw area where they removed his lymph nodes. This has caused some numbness on his left ear and cheek and it is very sensitive to touch. We were told that the numbness is a result of the swelling and should go away. He has been experiencing some tingling in the area over the past few days and we attribute this to the reconnection of the nerves, which means his feeling is coming back.

Pat has a bolster in his mouth, a spongy piece of material, sewn to his tongue to keep the graft in place and help it heal more regularly. It is aprox the size of a kitchen sponge folded in half - huge to be put in a mouth. Pat is basically ready to pull it out on his own... It's irritating the back of his throat and is making it very difficult for him to speak, sleep, and refrain from drooling. Despite this device's important role in the healing process, he's so annoyed with the little jerk that we're thinking about performing a ritualistic burning upon its removal. He was also pondering using it as the grand prize in the "guess the total cost of our medical bills contest" (the absurd hospital charges of course - not what we pay, we have great insurance). : )

Pat's next doctors appointment is on Wednesday 10/8. This will be the first time we've seen the Doctors since we left the hospital and this appointment will determine whether further treatment is necessary. He will have the tongue immobilization bolster taken out (not soon enough), the 20 staples removed from his neck, and we will get the results back from the pathology report. We're very hopeful that Pat caught this early enough and no further treatment will be required, but either way, were ready for whatever step is next.

Thanks again for your thoughts and prayers! Keep your positive thoughts coming for Wednesday!!

Monday Sept 29 - Homeward Bound

On Monday Pat was able to go home. Yay! It was a day early according to what we were planning for, so we were excited that Pat was well enough to go home. The morning was spent getting last doses of meds, packing up our stuff and getting everything we needed for home. We left the hospital around 2pm and were home by 2:30. Even though it seems like an easy trip, it really took a lot out of Pat to come home. Little things are difficult after such a big surgery. He took a really long nap when we got home. He woke up for some dinner, pain medication and a dose of TV and then went to bed for the night. I had some anxiety at first being on our own at home, no more nurses. After a few calls to my sister, Michele who is a nurse, I was relaxed enough to go to bed too. We set our alarm for the middle of the night medication and got some shut eye.

The Weekend

On Saturday Pat made more progress. He was up walking several times and he had one of the drains in his neck removed. His doctor keeps telling us that he is looking great and doing well. His swelling did increase in both his neck and his tongue, but that is normal. It was a little harder for him to talk due to the swelling, but he is still able to get some mumbled words out. I can usually understand him and sometimes act as his interpreter for the nurses. : ) Pat mostly naps during the day and has been sleeping all night with the exception of waking up to take pain medication. Pat's doctors say it may take 4-6 months to get back to his normal energy level. We are planning on lots of naps and down time for some time to come. It is all part of the healing process. Debi stayed with Pat in the hospital on Saturday night and I stayed at friend's apartment in San Francisco - thanks Michelle & Adri!!

On Sunday morning the second drain in Pat's neck was removed. Every day he is a little bit better and a little less hooked up to machines. The doctors came by and again were very positive. They said most likely pat would be going home on Monday, a day earlier than planned. This was great news! Debi returned to Phoenix Sunday evening. It was so wonderful to have her in town. She is such a strong person - I know where Pat gets it from! Thanks for everything Debi! Some of our friends came to visit Sunday evening. It sure was nice to see friends, if only Pat could be a part of the conversation. Good thing there was some football on to keep him busy. Sleeping in the hospital the last night was pleasantly uneventful. We are looking forward going home.