What round is this anyway???

     My guy hurts!!!  I'm so tired of watching him try to hide the pain.  Jason has lost almost all function in his left arm now. He has to hold it when he walks and he gets horrible pain in it.

     Sunday night we spent the night in the ER. At about 7pm Jason was taking his meds when one pill got stuck in his throat. He did not chose on it, it just didn't go all the way down. He was able to breathe but not eat or drink anything. At 1am he decided it was time to go to the hospital and see what they can do.
     I get that with each new person that comes in our room they need to know what they are dealing with......but there has to be a better way than for us to explain it over and over! Anyway, they took him for a CT and the woman man handled his head.....not good! If he told me this before she left the room, I would have handled it! The CT showed that the pill had gone down, but the sensation of it being there could still be bothering him. He tried some water and it stayed down!!! By 6:30am we were back home and in bed. Jason now has a pain patch and liquid pain meds.

     Today we went to Jewish hospital for his PET scan. The nurse was AMAZING! She told Jason that his comfort was most important! She put 2 pads down and propped his head up! He said it was so nice that he slept through the 20 minute scan! Our drug store is working on getting some of the meds Jason needs....but for some reason they don't want to let this location stock the meds. The pharmacist is doing extra paperwork to try to get it. What does this mean? It means we drove to Colerain in rush hour to get his pain meds!

     While waiting for his meds, the GI dr called to set up an appointment to have a feeding tube placed. Jason will have that done Tuesday December 27th. Hopefully that makes it easier to get some extra nutrients in him.

     We hope that everyone reading this blog has a very blessed Christmas and Happy New Year. From our family to yours! Enjoy every minute, waste nothing and ALWAYS tell the people you love....that you love them! Leave nothing unsaid! <3 p="">

And the hits keep coming....

I'm done with this roller coaster!  Can I get off now?

Jason has been having more and more pain in his neck around where the tumor is. He is taking more pain meds and nerve meds, with no relief. Last week Jason talked to Dr Chua about his pain and she sent him straight to Jewish hospital to have an ultrasound done on his neck.  After the ultrasound he went back to Dr. Chua's office and found out it was clear. Next step was a CT scan. He left her office and the hospital called saying to head right over.

Dr Chua was trying to tie up all the lose ends before she headed out of town, so things were going fast. That night at 7pm I missed a call from Dr Chua herself!! That immediately sent an uneasy feeling through me! We tried to call back but got the answering service who were no help. Jason would call the next day.

So now we are at "the next day".  CRAP!  The tumor in his neck has gotten larger and now there are spots back in BOTH lungs! Why can't we catch a break?????

Telling the kids was not fun!  My poor kids have been through so much. I hate to have to break their hearts.  So, here we go again!  Back on the 3 chemo treatments.

I'm at a loss.

Vacation

We got home from a week in Cocoa Beach Florida on Saturday night.  It was a great break!  Jason enjoyed sitting on the balcony and got to spend a day on the beach with us thanks to a friend who let us borrow a beach tent.

For the most part we just hung around and enjoyed the down time. That is vacation to us. The Friday before we left we went out for dinner, putt putt and ice cream. Jason was not feeling well so he skipped putt putt. His loss! WE HELD ALLIGATORS! We picked him up after and went out for ice cream. He got a milk shake and then really started missing his UDF milkshakes. LOL

The car ride was interesting. 5 people shoved into Jason's small Civic.... Jason was not able to drive as long as he thought he would and when he did, so I drove. AND I STAYED AWAKE FOR IT! That is huge for me!

Now that we are back home Jason will go back to his regular treatment. He is going to talk to the Dr about his issues though. He has been having a hard time swallowing and he chokes on his food a lot. I'm hoping they move his scan up so we can see whats going on. He is currently at treatment now....so hopefully later today we will have an idea of what is in store for us next.

Noah started a new job and so far he likes it. He is working for a commercial window cleaning place. No high rises for him, the highest he goes is with a ladder.

XOXO

WE ARE GOING ON VACATION!!!

Not much has been happening on the Smiddy front.

Jason is now only taking Erbitux for his treatment. This is a once a week treatment. This was actually the first study drug he took in Chicago. He and Dr Chua decided that his body and mind needed a break. The trifecta of chemotherapy he was on was really hard on him. He had no energy and it was causing him to lose function in his arms. The scan he just got showed that the tumor in his neck has not grown...but it also has not shrank. We are hoping that the Erbitux itself can help maintain the tumor. We would have loved for it to shrink...but the fact that it has not grown is just as much a victory.

We are getting ready to go on a family vacation next week!! My mom came home from RI a week ago and is going to stay with the animals. We are going to Cocoa Beach with Faith's friend and her family. Jason is really looking forward to the break from work and the "normal" life. I think this will be a great time for our family to regroup again. As the kids get older I feel like everyone is going in different directions.  Noah is going into his senior year in HS and is planning on joining the Marines after graduation.  Faith is going to be a Sophomore and Austin a Freshman!! We have 3 high school students!  I'm not sure how that happened! It feels like it was just yesterday that I had them in diapers!

I want to thank everyone who has been there for my family through our fight with cancer. This has been a LONG and bumpy road. We have seen many people come into our lives and go just as quick....but through all of this......we got to see who really cares about us. THANK YOU!

Reading

Last night I was at the YMCA walking my butt off on the treadmill. I decided it was as good a time as ever to start reading a book I recently downloaded on my Kindle app. "My Spouse Has Cancer, Now What?"

Let me start out by saying...my first impression.....OH MY GOSH THIS LADY IS IN MY HEAD! There were so many feelings and thoughts that she hit so close to mine! Maybe we (spouses of those with cancer) all feel pretty much the same! You have these feelings, things you never want to say out loud. Feelings that you can't help but feel and know they would look horrible or selfish if you said them.

I had to stop reading it while at the gym because it was hitting me so hard that I started to cry. I don't want people thinking the treadmill made me cry! ;)

It's hard to voice my thoughts, ones I don't feel like I should be having. Some that scare the crap out of me. I love Jason with all my heart and I will do anything I can for him.....but sometimes it's just too much! Sometimes I want to crawl into a little hole and pretend that my life is not like this. My husband is not sick and sleeping in a recliner in the living room every night. He's not losing function of his arm, he's not hurting so much that I cant really hug him. I'm a touchy feely person. I hug! It's horrible to not be able to hug my husband. To not get to lay on the bed with him and have my head on his chest. All the little things that we used to take for granted....we can no longer do.

Jason has beat cancer before....many times! Fingers crossed and many prayers he can beat it this time too. But every time he beats it....it takes a part of him with it. A part that I will never get back.

Take time and hug your spouse...hold their hand....lay with them....don't take a minute for granted! You are not guaranteed tomorrow and you are not guaranteed that it will be like yesterday!

People can be mean...

Last night Jason made his regular trip to UDF for his milkshake. While there he said there was a teenage boy and his girlfriend also getting ice cream. The boy kept looking back at Jason and then whispering to his girl. Then he turns and says out loud......"Look at this guy here! He's weird looking! Just look at him! Weird!"  One of the workers who knows Jason well turned and went off on the boy. Saying he has no idea what Jason is going through, that he is fighting stage 4 cancer and he needs to learn respect. He did apologise to Jason, but the hurt already happened. I felt so sorry for him. How could anyone be that rude to say that???

Today was a treatment day. Jason seems to be in pretty good spirits. He came home to rest and just left to go into work for a little bit.

I have such a strong and amazing man! He goes through hell and back and still keeps moving!

Where are we now?

I have been horrible at keeping this blog going!! I will try to do better!

Jason went back to Chicago for treatment on the tumor in his neck. After several treatments it was not working so we went back to Dr Chua for some more options.

The treatment Dr Chua came up with is a big one! Her words...."I'm throwing the kitchen sink at you!"

Every week Jason will be receiving Erbitux, and every 3rd week she will add Taxol and Carboplatin to the Erbitux. That is 3 cancer treatments in one!

Several weeks into treatment.....IT'S WORKING! The tumor is shrinking! Now for the other stuff. His hair is almost all gone...no biggie. The Erbitux has caused him to break out really bad. His poor head is the worst! Scabs all over and they hurt. The Taxol is killing the nerves and in turn causing Jason to lose function of his left arm. (He's left handed) All minor when in exchange for his life...but it has really been weighing hard on him. He struggles every day and I see it breaking his mental well being.

The kids are hanging in there. Obviously the news of the tumor shrinking helped with that. Faith has made a team for their schools relay for life event. It's nice to see all the kids that are around us as our "family" sign up to walk. It's going to be a great event! Just working on getting all the kids $100 in donations. Faith has already raised $140!!

Walking Warriors Relay for Life team page

You can also purchase a Lumineria with your loved ones name printed on it!

Treatment tomorrow.

Have a great day!