Farewell to a Good Friend

Pat's doctor at UCSF is moving on to an amazing opportunity at NYU. We hope he enjoys his new adventure - we know he is going to do great things. Best of luck to a wonderful doctor and good friend. We'll miss you.

http://www.nyu.edu/about/news-publications/news/2010/03/19/dr_brian_schmidt_nam.html

UCSF Check-Up

On Wednesday Pat had a great check-up with Dr. Schmidt at UCSF. It has been 1 year and 4 months since Pat's surgery and he is healthy & looking great! We brought Thad to the appointment and it was really special for him to meet the doctor who saved his daddy's life. : )

November Check-Up

Pat had a check-up at UCSF on Wednesday. Everything is great! We have not been there for two months and it felt like a long time. They did the usual neck and mouth check and it all looks great! Pat's next appointment is in January and we can't wait to bring the baby to UCSF to meet Pat's doctors and nurses.

Year in Reflection

It is strange to look back one year ago. Things were so different, so many things changed for us, so many things now are oddly better than ever.

In August 2008, after approximately 4 years of tracking some weird irritation on Pat's tongue, the results of a routine biopsy came back as cancer. We had no idea what we were facing or what was ahead. We scheduled a 9 hour surgery for September 25, 2008 and waited. Everything stopped for us yet things around us moved at the same pace. We went on a planned vacation to Hawaii and tried to go about our "normal" life. I think we had a pretty positive attitude from the beginning, but underneath it all we were so scared.

The night before Pat's surgery, one year ago, I started this blog. The deal was that this blog was not to be all about cancer, but a blog about the life that was ahead of us - after cancer. It was to become a happy place to keep our families up to date on our lives. I'm so happy is has become just that. I look forward to many years of happy blogging to come. We can look back once a year with amazement at how it started.

Pat's surgery and recovery was the hardest thing both of us have ever been through, but we got though it and Pat is better than ever. One year down - 60 more to go! We eat better, exercise more and have a new appreciation of each other and of life. Thanks for being apart of our journey. We are getting so excited to start the adventure of having a baby. It turns out that our life is not exactly what we had planned, but it is oddly better than ever.

One Year Cancer Free!

On Friday we celebrated Pat's one year of being cancer free!! SO happy to reach this milestone. We had some friends and family in town for the baby shower, so we were able to celebrate the big one year with some special people. Keep up the good work Pat! Can't wait to celebrate many more.

Year Two Appointments

University of California, San Francisco

Pat had a monthly check-up yesterday. It was quick and easy, and the kind of post-cancer appointment everyone hopes for. The golden words came from Dr. Schmidt "see you in two months". !!!! Pat's appointments will now be every two months for the next year. Yay! So thankful for our health today and everyday.

Good work Pat!

Dr. Schmidt & August Check-Up

We went and saw the wonderful Dr. Schmidt at UCSF yesterday. Pat is doing great and staying healthy. Yay! Dr. Schmidt is one talented guy. I wonder if he knows how amazing he is. Yes he has loads of experience, awards and letters after his name, but I think he really knows his success when he sees patients like Pat.

Dr. Schmidt, Thank you for working so hard and
for making the world a better place -
oh yeah, and for saving my husband's life. xoxo

Strike Out Cancer Day

Yesterday we spent a very special day at the ball park. Pat was selected to be honored at the Giants game along with 9 other cancer survivors. Pat was one of 4 who got to share his story in a video that was shown on the JumboTron right before the game. It was amazing! I am so proud of him and the other survivors for their courage and ability to share in hopes of helping others.

Pat on the field with other cancer survivors and Genentech executives being honored for Strike Out Cancer Day at the Giant's stadium. Pat is also on the JumboTron in the background!

Pat - second from the right. The man on the far right got to throw the first pitch! Phil, a four-year survivor of pancreatic cancer and father of three girls! What a great Father's Day!

This special annual game day is called Strike Out Cancer Day, a day sponsored by Genentech to help "Strike Out Cancer" and raise money for bay area resources that support people affected by cancer. Specifically, the fund raising supports the Wellness Community, an organization we have become very involved with. The Wellness Community is non-profit organization dedicated to providing free support, education and hope to people with cancer and their loved ones. The Wellness Community offers professionally-led support groups, educational workshops, nutrition and exercise programs, and stress-reduction classes. People affected by cancer learn vital skills that enable them to regain control, reduce isolation and restore hope regardless of the stage of their disease. It has helped us in so many ways - anytime we can help them we do! http://www.thewellnesscommunity.org/

June Check-Up

Yesterday Pat had his June check-up at UCSF. Everything looks good! Pat's doctors are very happy with how he has recovered and his progress toward reaching the 1 year milestone - only 3 more months to go. The biggies are the 1, 3 and 5 year milestones - he is on his way!

One of Pat's doctors is moving to Seattle to take a job with U of Washington. It was very sad to say good-bye. She is not only a great doctor, but an amazing person and friend. I think she saved Pat's life. I told her that we might have to name our first child after her, so now that the time has come we'll have to consider it. Her name is Jas (pronounced Jazz)- she is from the UK but she is Indian. Jas is short for Jasjit. Maybe a middle name? We'll see...Ha! : )

We were excited to tell Pat's doctors that we are going to have a baby, but something weird happened. When Jas walked into the room the first thing she said to me was "you look different, are you pregnant? ". How did she know? Has this happened to any of you? I told you Jas is gifted!!

May Check Up

Another good check up! Wooohoooo!

Pat saw his doctors yesterday and everything looks good!

April Doctor's Appointment

Another monthly visit and Pat is looking good! It is so great to hear how well Pat is doing by from the professionals! Everything is healing and recovering well, and all areas look good. Yay Pat!

March Check-Up

Another good check up for Pat! Wooo Hooo! As you know Pat goes in once a month and gets a check-up with his oral surgeon. They basically ask him how he is feeling and if he has any pain. Then they feel around his neck and take a look in his mouth. Everything is great!

It has almost been 6 months since surgery (Sept 25) and Pat is looking and feeling great. The scar on his neck is getting less and less visible everyday. His shoulder mobility is back almost 100% - most likely do to yoga. : ) Pat has been so great about staying healthy. He eats really healthy, does yoga 4 times a week and has just joined a group at our gym that trains for various races (running, biking and swimming). He went on his first group bike ride last Sunday. Way to go P!

January Check-Up

I have figured out that I am not the best blogger, but I am really going to try my best in 2009 to do a better job. After all, I love reading all my friends' blogs, so I will just have to find the time. I also know that many of you want to be kept up to date on Patrick's health, so I'll try to update you more often.
Patrick has a check-up with his oral surgeon/cancer specialist at UCSF once a month and January's appointment went well. Everything looks good and the healing has progressed as it should. It is just a matter of keeping an eye on his tongue, mouth and neck to make sure the cancer does not return. Just so you all know we are very on top of it. If it were to return the most important thing is to know it is there and do whatever needs to be done to get rid of it. The doctors continually remind us that everything looks good. We actually look forward to the monthly appointments - it is nice to get the "ok" and we always feel a little lighter when we leave UCSF.

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.