RIP Joe

I wanted to start my blog today in hopes that you all will lift my Dad's good friend Joe Leister and his family up in your prayers. Joe passed away this Sunday after a hard fight with brain cancer. Dad loved and respected him as both a friend and a pilot and I know will miss him very much. A few months after Dad was diagnosed, Joe called Dad and said "OJ, I think you gave me cancer!" They flew together right before Dad was diagnosed and not long before Joe was. It will always be one of my favorite stories because its rare to find two men who can truly find the humor in cancer. RIP Joe.

Dad has definitely kept busy the last few weeks. Here is what you missed:

Uncle John came into town again... a few days filled with food, golf, and naps!

Little did you know...we are actually aliens.

Dad went to the Eric Clapton concert last week

They had great seats and a great time!

He got to play golf with some of our neighbors growing up, I can't even imagine the trouble they got in to!

Mr. Bill and Dad

Mr. Scott, Mr. Bill, and Dad

On Saturday Dad went to a spring training game with Cunningham and his family. We were excited because I was going too with some friends so we were going to meet up for a little bit. Welllll after 45 minutes of trying to find each other, we realized we were at two different spring training games! It was definitely a "blonde" moment for us but one that keeps us laughing.

The sweetest.

Aside from all of the fun, Dad has really felt like crap the last three weeks, and honestly this whole chemo round. Dad is still holding his own though even with the lack of energy, nausea, back pain, and hard time sleeping. 

Well yesterday was already days 4 chemo cycle, but the day did not go smoothly to say the least. We waited over an hour for blood work, which is fine we are flexible and know they are busy. From blood work we always go up to meet with Dr. K. Yesterday, instead of meeting with Dr. K, we met with a Nurse Practitioner...wait what?? There is nothing against NP's, heck I am studying to be one, but yesterday was a huge appointment one in which we were to discuss major points in Dad's treatment and health. Here are the main points from the meeting:

1. The Nurse Practitioner was so incredibly condescending and acted as if we were an inconvenience to her
2. Dad's stomach issues are not getting better and he is on 3-4 medications to fix it. I asked if we could do a scan or test and was ignored and Dad was told to just take his meds.
3. Dad had to do a urinalysis after the last chemo so when we told her no one ever calls us and we never got the results she said "yes they do call you" as if we were lying so Dad rightfully snapped back and told her she was wrong. Her only response was "then thats what these appointments are for". Can I just tell you that our last appointment he wanted Dad to see a counselor, we didn't hear anything for 3 weeks and the appointment is not until next week. 4 weeks. It takes 4 weeks to get an appointment for something that is supposed to help him? Awesome.
4. She couldn't refill Dad's Atavan because it wasn't refillable for another 3 weeks. Well if she would have listened that Dad was taking 2 .5mg pills in order to sleep should would have had the same light bulb I did...why not prescribe him the 1mg dose so he can sleep and not have to worry about running out? Ding dong.
5. We are due back April 9th to meet with Dr. K to discuss the results from the urinalysis and to schedule the scan. Ummm no, why are we going to waste our time to wait 3 weeks to be told we need to scan and then another 2 to get the results and another 1-2 to schedule the chemo. These people are out of their mind. We are calling next week to set up the scan (both chest and abdomen) ourselves.

By the time we got up to Christine for chemo, we were all red in the face. She was appalled at what happened and told us not only what we should do but also looked at all of his meds and explained their symptoms and why he is feeling the way he is feeling. FINALLY. Christine is such a beautiful example of the kind of service that a nurse or doctor should be giving. She takes the time to really look at the issues at hand and figure out what needs to be done to fix them. She is one of our many angels and we are so blessed she is helping to take care of Dad.

After a very frustrating day I am pretty sure I can speak for all of us when I say we were feeling a little down in the dumps. Days like that really make you question if you are at a hospital that is truly watching out for your best intentions and planning your best chance for survival. Any time I am feeling frustrated I remind myself of Angela Faddis, a woman in our community who died of colon cancer 6 months ago. I have been following their family's blog for quite sometime and their faith is nothing short of inspirational and always reminds me that my hope truly lies with God and what is or isn't going on with the hospital. We continue to pray daily for God's healing and are grateful to those of you who continue to pray with us. Will keep you updated, have a great week!

"In all of this, we know that our true hope lies in God. It is easy to find hope in a certain treatment, or surgery or Cancer Center. It is easy to place our hope in a clinical trial or some other means, but in the end our hope is in Christ. Our faith urges us to seek healing and to never stop hoping." -Chris Faddis

Taxotera=Suckotera

Hi all! Well February has come and almost gone...and I have let my blog draft sit for far too long! [Sorry Nan!] Dad has now had three treatments of Taxotera...which I would like to call "suckotera". Dad has been so blessed the last year to be basically side effect free from the chemos, but the taxotera is showing no mercy. Dad has honestly felt like crap since he started on taxotera. It's not allowing him to sleep, he is throwing up more, and worst of all, in his opinion, he is losing his hair. We went to get it cut a few weeks ago when it started falling out which was hard for Dad, but honestly I love his hair short! Since then his hair has thinned out a lot, but still holding strong. We were cracking up today because it's almost like his brown hair fell out, and his grey hair is hanging on for dear life! 

Dad had an appointment with Dr. Siever last week to check on his wheezing. The symbicort inhaler is working wonders for Dad and is helping him breath a lot better. He uses it twice a day and then a different inhaler if he needs in between. While he was there he was prescribed Trazadone for anxiety and Percocet for pain in hopes that that was the cause of him not sleeping. It was a rough week for Dad trying to figure out the right "cocktail" to use. The mixtures were either too strong so he was sleeping in until 8 (unheard of, even for a good night's sleep) and "hungover" all day from the drugs or the mixtures were too light and he was getting up at midnight. Dad thinks he has figured out the right dosage to take and will hopefully be on the road to many restful nights. Sheesh, the things a guy's gotta do to get some sleep!

Yesterday was another chemo day, it is amazing how some days are so packed and full of long waits and others are empty and we get called back the second we sit in the waiting room! Standard blood work first and then we saw Dr. K which went well. We talked about how Dad has been feeling (every time he gets asked all he does is take of his hat to show his hair loss, it makes me laugh) and all the new drugs Dad is on. Dr. K wants Dad to see Dr. Goodall, a counselor at MD Anderson. He thinks it will be beneficial to Dad to talk to someone considering he has been living with a life changing disease the last year. He thinks it will hopefully it will help with the sleeping so that should be scheduled here pretty soon.

I feel like we need to start calling chemo "chemo with Kristine" because we always request her to be our nurse (naturally, she is the best). Chatting with her always makes the chemo go by so much faster...but lets be honest we are only up there two hours! My good friend Cynthia had her class make get well cards for Dad which were soo sweet. We opened them during chemo and were laughing so hard!

The group fav "Hello OJ, My name is Carolina. I am 7 years old. I hope you get mush (much) better. I like spgedy (spagetti). I hope you love my pigr (picture). Happy Valentines Day!"

We have one more round of chemo to do and then we will rescan to see how it is working. When Dad was at Siever's they did an Xray which showed no change in the tumor since we started, which is good it is stable. We don't have much planned the next few weeks, just hanging out! Will keep you updated, thank you for all the continued prayers...we are so blessed!

Chemo 2/5/2013

Chemo 2/5/2013

Valentine's Day @ Morning Squeeze...best date ever!

Like father like daughter...naptime never gets old

<3<3<3<3<3

 

 

 

 

 

PS-I DO have a sister who spends all of her free time with Dad as well, she just doesn't like to take pictures :) #shoutout Love ya sis.

One Year Ago...

Can you believe that one year ago today, I was writing my first blog post for A Cup of OJ?! We were sitting in Dr. Siever's office today and realized that it was exactly one year ago today that this whole journey started...and what a journey it has been! Although cancer is not a journey anyone wants to go through, I'd say we've been pretty blessed thus far!

Well it has been a pretty insane couple of weeks! As I started writing I realized I haven't even written about the first biopsy (just a littleeeeee behind on the blog). They did a needle biopsy through the lung and it went really well. Dad was in and out in no time! When we got the results, Dr. Weiss said that they were non-cancerous. WHAT?! We were shocked. They wanted to do more testing so we got an bronchoscopy, the same procedure dad had a year ago that diagnosed the cancer. When Dr. Wright came out after he was finished, he said the mass looked like scar tissue, and much different than it did a year ago. They weren't official results, but I thought I was going to puke! 

<3

Food Coma

Well we got the results, and there are still cancer cells in the tumor...which is what we all figured. Regardless, I know God is still working his wonder on Dad and I am confident the original biopsy results were not a mistake, yet a sign letting us know God is still with us through this journey.

Dad started Taxotere on the 15th. We got to sit with Christine and catch up with her which is always so lovely. The chemo itself takes no time at all! We were out of there in under 3 hours! Dad has responded pretty well to the chemo so far. There were a few days last week where I think his energy level was lower than he would admit :). This week we think he caught the stomach flu, he couldn't keep anything down for almost a full day! Poor thing. He is feeling much better now though. Uncle John also got to fly in last week which was wonderful! They played golf everyday until they got rained out Thursday and we had to send Uncle John home.

They took probably 15 pictures...this one was the best and they still all have goofy, sun blinded smiles!

Breakfast date!

Our appointment with Siever went well today. Dad got a new inhaler because his wheezing has been pretty bad. He also showed us pictures from the bronchoscopy which was SO COOL! It was nice to finally see real pictures of what they see.

These are the pictures of Dad's left bronchial tubes. The bottom left picture shows mucous and cancer cells. They aren't sure what those white things are in his bronchial tubes, Dr. Siever thinks possibly scar tissue.

We have a pretty uneventful week this coming week, but start chemo again next Tuesday. Dad will probably look a little different next week when I post pictures, he started losing his hair today. Although everyone says it's "just hair", its a huge part of a person. Although I think Dad will look handsome no matter what, he thinks he has "an alien head"...direct quote. We all love you daddy, hair or not, cancer or not, you are our hero!

Love that smile! Dad did not love those burgers so much.

Comparison of Dad's lungs from July (right) to now (left)

New Beginnings

Happy New Year!! And I suppose I should wish everyone a belated Merry Christmas as well! I hope you all had an amazing holiday season, I know we did! Christmas was definitely the best we ever had, so very special. Dad and I went to mass in the morning, followed by the traditional breakfast burritos by Mom. We opened presents, napped, and went to see Les Miserables. The movie was so incredible...but the fact that we brought shrimp cocktail and fritos with onion dip made the movie 10x better. It was a great, great day! We didn't get around to sending out Christmas cards this year so here is our Christmas card picture for your enjoyment:

Typical!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We took these while celebrating Kristen's 22nd birthday on the 20th. I can't believe she is 22! I tell her all the time and I know she gets so annoyed, but I still feel like she is my 13 year old baby sister!

Yesterday we met with Dr. K at MD Anderson. It was good to see Dr. K again, he was very chipper yesterday. However they did not hear anything from TGen! I was a little disappointed in TGen yesterday, but apparently they sent the paperwork and scans on the 17th... Dr. K had no idea what was going on so we had to fill him in on everything. Long story short, our plan now is to have the biopsy tomorrow and when we get the results go from there. We will tentatively start Taxotera on the 15th depending on what the biopsy shows (remember we are looking to find out specific chemo cocktails that could benefit Dad). Dad has been having some back pain which makes it hard for him to sleep so Dr. K prescribed him some painkillers so he isn't taking a million ibuprofen.

It felt like a lot had change had happened at MD...new nurses, new doctors, and twice as many patients. We could not believe how many people were waiting for blood work, it was insane! Not to fret though we still got to see our favorites Juanita and Christine! I also locked eyes with Jill...muahaha "we'reeeeee baccckkkkkk".

We are ready to take on 2013 and all of the new beginnings it will bring us full force! God has blessed us with a family full of strength and positivity which makes facing any and all new changes easier. Please keep Dad in your prayers tomorrow and in the next few weeks while we are awaiting results. We are so blessed for you all! Xoxo

Braving the Storm...Which Looks Like Rain

Hi all!

I cant believe 3 weeks have passed since I last updated the blog. I always feel like I just posted, but time always seems to go so quickly! I think I still must have vegetable brain from finals. Well nothing too crazy has gone on the last few weeks. Dad has gotten to play some golf, although it's finally starting to get chilly here in AZ so he hasn't been playing as much. My cousin Blake(sta) came into town this weekend so we got to catch up with him Thursday for dinner, of course we forgot to take a picture. Friday Dad had all of his scans to see how the clinical trial was going. They are so great up there at Scottsdale Health Care, we were in and out in no time!

Saturday Dad and Cindy went to the Southwest Christmas party. Dad looked so handsome! Here is the only picture he took (I swear, we only take pictures because I force everyone to).

Dad and Jackie

Uncle John came into town on Sunday, finallllyyyy! We have missed him! Its always good to have him in town for the appointments, even when I know it's an excuse for him and Dad to play lots of golf :)

Well TGen was great in a quick return on the scans. We got the results Monday and Dr. Weiss let us know that unfortunately the clinical trial is no longer working. The tumors have collectively grown 20% since we started in October, meaning that we are no longer eligible to participate in the trial. Dr. Weiss was so surprised because Dad has been feeling the best he has in a year. Dr. Weiss went over a few options and asked us what we wanted to do. Dad kind of chuckled and said "I don't care we want to do what you think is best!"

On January 4 Dad will get another Biopsy on the adrenal tumor (which contains the same cancerous cells as the lung tumor). It will take two weeks to process, but the lab will look at which chemos will specifically target Dad's tumors. While those are being processed, we will be going back to MD Anderson to see Dr. K. There, Dad will receive a chemo drug called Taxotere. When the test results come back they will figure out whether the Taxotere, another chemo drug, or a different clinical trial is going to give Dad the best possible results.

While we were processing everything we were joking about what is going to happen when we go back to MD Anderson. 1. Do you think they will give us a new Nurse Navigator? 2. If not, Dad is going to give Jill the "I'm baaaacckkkkkkk" and "I'm watching you" look. No words necessary. It will be interesting, but it will be so great to see Christine and Juanita again!

I could tell the nursing staff had a hard time saying bye to Dad, naturally...they LOVE him there. I think they would hire him on if they could.

Dad and Katie

Dad with the TGen nursing staff

Obviously this is not news any of us wanted to hear. When I started to update the blog Dad suggested the title, which is true. Cancer is such a bumpy road with so many ups and downs and what feel like dead ends. But all we can do is have faith in God's plan and look forward to the next plan the doctors have for us. We are still so blessed to have options and multiple doctors working hard for Dad's survival.

When we got done with the appointment Monday I went to In & Out for lunch. When I got to the window to pay the the attendant let me know the car in front of me had paid for my meal and I immediately broke down in tears. It was just one more reminder of how much good there is in the world and to continue to stay positive for that very reason

Until the 4th, we are going to enjoy a wonderful Christmas season together! Kristen and I are finally done with the semester so we are excited to be able to spend more time as a family! Thank you for your continued prayers, have a very merry Christmas from all of us!

Give Thanks

Hi all! I hope everyone had a wonderful Thanksgiving and you are all recovering from your turkey comas! We had such an incredible Thanksgiving and it was so nice to be able to spend it together. We had, and continue to have, so much to be thankful for this year and I could list everything but it would be a novel. Three things I am especially thankful for are 1. Dad's health through this cancer and his amazing ability to continually stay so positive and bring humor to a scary situation. He inspires me everyday! 2. The amazing support we have from God, our family, friends, and staff at TGen. None of where we are today would be possible without them. 3. The ability to spend time together. Our family has always loved being together, going to dinners, movies, and all of that fun stuff but the last year has been really nice taking that extra time to be with each other!

We went to church in the morning and then I hosted dinner at my apartment... and I will just tell you all now, I have extreme appreciation for those who host dinner parties for large amounts of people/families! The timing of the oven items alone is truly an art, so cheers to all you kitchen masters! Poor Dad had to get a root canal the night before and had a hard time eating, but he still managed of course!

Dad feasting

<3<3<3

Things at TGen have been going great. The chemo days have been getting shorter and shorter and next week he will be done by lunch! Dad has made friends with I am pretty sure everyone who works there now and they all love him. When we were there yesterday for an exam I heard one of the nurses says "OJ is here!" to another nurse which just made me smile and reminded me of how great of an impact Dad has on peoples' lives. We will scan again on the 14th of December and will get the results that following Monday so until then we are just taking it day by day!

Dad, Kristen, and I have been able to see a few movies lately (honestly I have seen more movies with them in the last 4 months than I have seen combined in the last 3 years) and one that you all MUST see is Life of Pi! What an incredible movie, I think it was one of Dad and I's all time favorites! I could babble about it forever, so instead I will just recommend that you go see it. This is one of my favorite quotes from the movie which seemed to be so fitting to our lives:

“I must say a word about fear. It is life's only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unnerving ease. It begins in your mind, always ... so you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don't, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.”

Most of the time when I write the blog, it is like a giant puzzle. Writing papers were never my forte in school so figuring out the flow of the post sometimes takes me longer than necessary. I can tell it is the end of the semester because all I want to do at this point is put everything else in a miscellaneous section instead of finishing it off smoothly...and that is what I am going to do :) Love you all!

Before going to see Lincoln a few weeks ago

 Dad got to go to Kathy Schieb's party last week and had a ton of fun catching up with friends from work!

Dad and Bev

Dad and Kathy

Beating the Odds

hello hello! Well Dad has been doing GREAT since the first chemo! It's like he hasn't had chemo at all it's amazing! Last week Dad had an appointment with Dr. Weiss on Monday. No one was going to be able to go but sneaky me went and surprised him. We talked movies with the nursing staff while getting his blood work done and then we met with Dr. Weiss. It was a short appointment but Dr. Weiss was very pleased with how Dad was doing. He reiterated that we continue on the path that we are on until December 13th (I think...) when we rescan and then we will go from there. Obviously good results showing no growth will allow him to continue with the DKK drug and if there is growth then we will get a biopsy and send the tissue to the lab for another chemo option.

Last week Dad went on the annual golf trip he goes on with Uncle John and his friends. They were there Wednesday-Saturday and had so much fun. Since I love tooting Dad's horn, he played AWESOME. He shot in the 60's the whole week and one day was 5 under par! (Insert the song "Can't Touch This")

Uncle John & Dad

The group

Today was Dad's second chemo. It went really well and they even gave Dad offsite privileges! Around 1030 they came in and told us we could come and go as we please until 430 when Dad had to be back for blood work. We were all a little surprised and I honestly forgot to ask why they didn't need to do blood work every two hours this time but we weren't complaining! Before we left for lunch, Joy the poodle came by and paid us a visit. She was very nice and I hope she comes back next time :)

Other than that I really don't have much to report. Dad and I had breakfast on Sunday and we were talking about how it has already been 11 months since he was diagnosed. We smiled and said "beatin the odds" while we "pounded it". We really have been so blessed by God to have Dad in such wonderful health. I know with all my heart God is guiding our path for good and is creating miracles in our life everyday. Thank you for supporting us while we continue to fight and see the good in this situation. Love you all, now go get your vote on!!

LASTLY- My sister Kristen was accepted into Teach for America last week!!!!!!!!! I cannot even explain how incredibly proud we are of Kristen!!!!!!! She will be based in South Carolina for two years starting next fall. Being accepted is such an honor, only 7-11% of applicants get accepted! We cannot wait to see the opportunities this brings her, we know she is going to change so many lives! Congrats Kristen!