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