I'm Not Retarded! I Have Cancer!

Well where do I begin!? It blows my mind how fast time flies. Especially now that it has been two hours since I wrote the previous two sentences :). Here is the recap from the last 2 weeks:

• Dr. Siever drained a liter of fluid from dad's pleural cavity. That is the amount of fluid that had accumulated in about 2.5 weeks since he was released from the hospital. To make this appointment really exciting, I fainted in the middle of the procedure. It was our most eventful appointment yet! The procedure, although only temporary, really made Dad feel better and more importantly breath better.

The excitement

A whole liter of fluid

The yellow portion on the left is the pleural cavity where Dad's fluid is accumulating. The right is a normal lung

• This past week Dad had a PET scan. We met with Dr. Reuss (cardiologist) two days later and she let us know that we were essentially out of options. The cancer has spread and we are left with the options of hospice and chemo (which I will talk about later). The fluid around the heart is metastatic (cancerous) and with the hard, scar tissuey (totally know that isn't a word) pericardium, the heart and lymph system aren't working properly. Dad is in a state of cachexia (also called wasting syndrome) where basically the cancer is using all of the energy Dad is getting from his food. It makes people lose weight and appetite, fatigued, and weak. Although it wasn't the easiest appointment, Dr. Reuss was very honest, informative, and compassionate. While examining Dad she said "Your sentences are good!" and Dad replied with "I'm not retarded! I have cancer!" with the most real look on his face. The whole room was laughing and it is one of my favorite moments to date. 
• Friday we met with Dr. Ejadi (chemo doctor). He talked a lot about what Dad could or could not do, what might or might not work for the first 25 minutes before stating that he didn't think chemo was a good idea. It was one of the first times that I really snapped back because I didn't understand why we were talking about chemo if he wasn't going to recommend it. Long story short, Dad is really not eligible for chemo, he is too weak. He also does not meet the criteria for a clinical trial. He could get a biopsy this week which would test for some other specific markers that might help but that takes 2-3 weeks just to process and Dad needs to decide if he feels strong enough to do it. 

Our favorite thing to do

Our warrior <3

From all of our appointments we have decided to bring hospice in. It is not us giving up on Dad but making sure that he has the access to care and meds that keep him out of pain. They have been great so far and have altered his medications to help him stay out of pain. The nurses and doctors are always on call and will come out whenever we need. They do not think Dad is ready to go to a hospice facility at the moment so until then we are watching a whole lot of old TV shows that were made way before I was born and doing whatever the heck we want :) Dad still has his "OJ" spirit and that beautiful glimmer in his eyes when we laugh. We have been so blessed to spend so much time together as a family, we couldn't ask for anything more!

Tonight was our last night together as a family for a while...Kristen is moving to South Carolina for Teach for America tomorrow! Kristen and I are driving out there just like Thelma and Louise (watch out world...seriously though, clear the road) and we are so excited. We will miss her so much, but we could not be more proud of her for going after her dreams and making them a reality.

Family <3

The Warrior Life

Hi all, TGIF :)

Well it has been an eventful two weeks here for the Alexander's...the most exciting thing being my baby sister graduated from ASU! We are all so proud of her and cannot wait to see her flourish in South Carolina working for Teach for America! She is going to rock it! We were so blessed to be able to celebrate her graduation with Uncle John and our cousins, this week was a blast! There were a lot of laughs, and a lot of fireball.

Proud Parents

Family love <3

Our cousins James, Blake, and JJ with Kristen

The whole Family!

So proud.

Well Dad has not been feeling too great the last few weeks. After his birthday we had a few appointments with Dr. Ejadi (chemo doc), Dr. Ruess (cardiologist), and Dr. Kaskey (surgeon).
1. Dr. Ruess's office did another EKG on the Monday the 29th. We didn't get to see Dr. Ruess but they said they would call us.

2. Tuesday the 30th we first met with Dr. Kaskey. His PA checked all the places where the tubes were, took out some stitches and said they were all healing well. She showed us how to properly bandage dad's right "wound" because it was still seeping but it was not a point of concern. What we were concerned about was the swelling dad still had. His legs and arms and abdomen were still very large (4+ on a 1-4 scale). While we were asking about it Dr. Kaskey came in. He ironically had just gotten off the phone with Dr. Ruess who told him that she thinks Dad has constrictive pericarditis. Constrictive pericarditis is when the pericardium essentially turns to scar tissue, restricting the heart from beating properly. Dr. Kaskey said that he thinks the world of Dr. Ruess but is also a little hesitant to officially diagnose Dad with it. In his many years of being a surgeon he said that it is extremely rare and he personally has not seen it happen to someone after a pericardial effusion (what he did to Dad a few weeks ago in the hospital) They put dad back on coltrazine and increased his lasiks to see if that would reduce the inflammation around the heart as well as the swelling. If that doesn't work the only way to fix constrictive pericarditis is with open heart surgery and to remove the pericardium from around the heart.

3. We met with Dr. Ejadi later that day to discuss treatment options. The main issue we decided we needed to focus on was the heart issue and after that we could focus on chemo. In the meantime he wanted to get another lung biopsy so he could get a specific chemo regimen put together. He prescribed Dad some oxygen so now he has his own personal oxygen generator!

Since then Dad's swelling has gone down but his breathing is getting worse and his appetite is very small. We met with Dr. Ejadi yesterday and went over Wednesday's CT scan. The scan showed that Dad's lungs have fluid in them again and they are about half full of fluid. The fluid in his lungs legs and abdomen has basically become gel. Without proper circulation (which stems from proper heart function) the fluid in the body will turn into a gel form, similar to how a drop of blood becomes sticky after a cut. If the fluid is gel, then the only way to remove it is to put tubes back in his lungs. As of right now Dad does not want to go back into the hospital so we are continuing the oxygen and pain killers (oxy and vicodin and a pain patch for his back) to keep him comfortable. Even through all of his pain he still has the smile of an angel which is one of the infinite reasons why he is our hero.

I know many of you have been calling Dad to check with him and chat but the phone calls make it hard for him to breathe so if you'd like to send your love feel free to text him or call one of us. We cannot thank you all enough for your continuous love and support, it has been such a blessing for all of us. I will update again in the next few days but until then please keep our warrior in your prayers. Love you all.

My 24th birthday dinner

Best Buds

Caitlin and Dad with his NEW 2013 Masters hat! Thank you to the Hollidays <3

Happy Birthday Dad!

Happy Birthday Dad!!! Yesterday (April 21st) was Dad's birthday, and oh what a great day we had!! Dad's BFF Kevin and Uncle John flew in this weekend which was SO wonderful, it was just non stop laughter yesterday. Dad wanted to go big this year for his birthday so we got tickets to the Joe Bonamassa concert. Before the concert we ordered in NYPD pizza and feasted like kings.

My favorite picture

<3

We love Uncle John!

Dad and Kevin

Best bros

Happy Birthday!

Well we didn't have any ordinary experience at the concert, let me tell you! After security escorted us all to the front of the ticket line, we took our seats in the SECOND row! Oh yeah, and it was awesome. We were so close we could see Joe Bonamassa's chest hair! I am sure by now most of you are wondering who Joe Bonamassa is...because lets be honest I had never heard of him until we decided to do this. Dad likes to say he is "the next Eric Clapton", and after seeing the concert I believe it! What an incredible guitarist and singer.

So excited

At the end of the concert, Joe threw his guitar pic and Dad got it!!! So great

Dad has been taking it easy since he has been home. He is still draining fluid out of where he had the chest tube in the right lung. Anytime he laughs or coughs fluid will seep out of the wound! Better out than in :) Since it has been leaking so much we started to use maxi pads vs. gauze to cover the wound and its working great! I bet Dad never thought he would ever have to use a maxi pad hahah :) Dad had an appointment with Dr. Siever today. Everything is looking "satisfactory" but after all he went through the last few weeks that is ok. He said he needs to exercise and eat which I'm sure will help with his swelling (yes he is still swollen :( ) 

We have a few more doctor's appointments lined up the next few weeks, but until then we are taking things day by day! Each day is a blessing and one that he gains more strength than the previous day. Have a great week!

Happy birthday Daddy, we love you!!

Ps...the spot on Dad's shirt is not fluid seepage...but instead pizza grease...just another sign of a great feast :)

A Quick Update!

What day is it? What is my name? I think that is how we are all feeling right now after a crazy few weeks of hospitals, doctors, tests, and crappy televisions. I apologize for the lack of blog updates, every day I kept saying I would write an update the following day when we got more information but it turned out to be a never ending cycle! Hopefully I can get you caught up to speed :)

Rewind back to the 26th of March, we met with Dad's NEW chemo doctor, Dr. Ejadi, at TGen. We had a great appointment and fell in love with him from the beginning. He listened to Dads entire story, the issues he was having, ect and wasted no time in setting up a plan. He wanted to get a CT scan to see what was going on after the 4 rounds of chemo so he got him in 30 minutes later! By the time Dad got home Dr. Ejadi called Dad back and said he needed to turn around and check himself into the ER because there was fluid around his heart.

Always all smiles, even in the ER

To keep the first few weeks simple, Dad stayed in the hospital for four days to be monitored while they put him on a few medications to get rid of the fluid around his heart. Not only was there fluid but his heart was beating very irregularly, up to 192 beats per minute! Since his hear twas beating so fast, his body was only focusing on his lungs and heart which led to edema (swelling of the limbs). They ended up sending him home because we all agreed that he could rest at home just as he was in the hospital. The next week he was still feeling lethargic, extremely short of breath so he went to see the cardiologist who put him on another medication and sent him home. Three days later we checked him back into the ER because he was just not getting better. Saturday the 6th Dad had surgery to remove the fluid around his heart and in his lungs. They then placed tubes from both lungs and the heart to drain the fluid into little boxes that look like this:

Sleeeeeppppyyy

Dad stayed in the ICU until Tuesday the 9th where they moved him to the telemetry wing because he was doing better. He was good until about 7pm that night and had a big set back. By Wednesday he wasn't able to walk anymore and could barely breath in or out. The nurses didn't think he was going to make it and Dad really didn't think he was going to either. After many answered prayers Dads health was going in an upward direction on Thursday and he started eating, walking, and breathing better. Since then, he is down to one tube in his right lung and has lost at least ten pound of water weight.

Dad has now been in the hospital 10 consecutive days and Lord knows he is bored out of his mind! We moved to the oncology floor yesterday which was exciting because Dad now has a flat screen TV in his room instead of a green tinted RCA TV (imagine watching 4 days of The Masters on a green TV). The right lung is still draining a little bit too much to let him go home so they are going to try another medication to stop the fluid. Praying Dad gets to go home in the next few days, he is getting cabin fever :)

What am I forgetting? A million things I can already tell, but all you need to know is that Dad is doing much better! Thank you all so much for the calls and prayers the last few weeks. I know we don't always return your calls, but just know that we appreciate them regardless. I will update again in the next week when we know more, love you all!
 

RN Clown visit, she prescribed chocolate

Dave Harmon came to visit!

First night out of the ICU

Getting an ultrasound to check for blood clots

<3

Listening to some tunes

One of Dad's carepackages..thank you to the Hollidays and everyone else that sent stuff for Dad!

Getting ready to walk some laps

We have been taking lots of naps

Best Buds

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