Follow along and read about how Ryan spent his final days surrounded by those he loved the most... his FAMILY.

You can follow my blog at: Our life in Letters to Ryan

September 30, 2009

That classic infomercial phrase...

Day 7

After a rough day yesterday, things got a little worse, before they got a little better.

The mucositis is causing all the membranes to slough off and become VERY sore. That makes for a painful mouth and a painful bum. Just when we thought THAT was it, that classic infomercial phrase comes to mind,

"But wait, there's MORE!"

So just when we get the pain somewhat under control, SOMETHING else decides to manifest itself.

Ryan was on morphine to help with the pain. Unfortunately, it wasn't just helping with the pain, it was also making him unable to urinate. Because Ryan could not go to the bathroom most of yesterday, they decided to use a one-time use catheter last night. The reason why they are against putting in a permanent catheter, is that it poses a much greater risk of infection and it can cause a dependency. (I think that is the LAST thing Ryan wants to come home with when he leaves the hospital!)

Luckily it helped, but it HURT like...

So this morning, things really hadn't changed. The mucositis was getting worse on BOTH ends, and each trip to the bathroom was unsuccessful. Ryan did NOT want to eat or drink because he didn't want to deal with the discomfort of a full bladder that couldn't be emptied. So when the Dr came in, she wasn't too thrilled with his nutrition and told Ryan this:

"Look, if you don't eat, we are going to have to feed you via IV and it is not fun- it will give you horrible diarrhea and you will be worse off. So even though it is really hard to eat right now, and the bathroom situation is not helping, you NEED

She was VERY bold with Ryan, and that is a GOOD THING!

That is one thing you can guarantee here, the nurses and doctors do NOT beat around the bush. We knew this was coming, we have been told before that when Ryan's counts were low, around day 10, the side effects were going to get BAD. Of course, it doesn't really affect you, until you are in the moment.

By noon today, Ryan STILL had a full bladder. So, it was time to cath him again. He was dreading it, and again, it was VERY painful.

[At one point, when Ryan was very swollen from water retention and was on meds that made him go every 10 minutes he said, "Man, this is so annoying, I don't want to pee AGAIN." Sadly, it came true. You would never think that you could get so excited for "liquid GOLD"]

The combination of burning from the catheter and the mucositis was making things unbearable.

They decided it was time to start the PCA:

The PCA has helped TONS with pain management and everything got a little better as the night progressed.

However, Ryan did NOT want to walk today. I hate being so pesty about it, but the Dr did say this as well:

"The patients who walk EVERYDAY are the ones who get out early. If you walk, you want to eat. The ones who don't walk are the ones that stay here for a LONG TIME. So WALK and do your mouth care!"

So after being unsucessful at getting him to eat and drink more, I kept up the pestiness


at 10 o'clock tonight, he did this:



I will start making the Q/A part of every blog post

Q: What is a PCA

A: Patient Controlled Anesthesia

It's a pump that continuously administers pain meds and allows Ryan to have control over how often he receives the medicine. Currently, he can press the button (see pix below) on the PCA every ten minutes. If he presses it before then, it won't administer any medicine, but it keeps track of EVERY time he presses it. That way, the Dr's can assess how often he is using it and give him more or less pain meds as needed.

Q: *How long will the mucositis last? **Is there anything else he can do to help it out?

A: *Usually about 1-2 weeks, sometimes longer. **He uses a series of mouth rinses to help in cleaning/protecting the mouth sores and other rinses that have medicine to numb the mouth. His mouth hurts so bad that drinking liquids is hard. It was a struggle for him to eat some Jello for dinner.

Q: Why don't they just keep giving him platelets to be safe? **How can we donate platelets?

A: They do! Yesterday Ryan's platelet count was low, but it wasn't low enough need a transfusion. As a precautionary measure, to help with bleeding, they decided to go ahead and give him the platelet transfusion. **Patients undergoing bone marrow transplants, surgery or chemotherapy rely on platelet donations to help them recover. If you want to give back to your community or help a family member who needs platelets, donating is a relatively simple process known as apheresis. Check here: American Red Cross and they should be able to assist you with donating.

Petechia- the joys of a low platelet count:

Thank you for asking questions... PLEASE do.

I am appologizing if this post was TMI, but this is CANCER for you.


Thank you all for the constant LOVE and SUPPORT



Tornado Alley said...

Thanks for all of the updates and for answering questions, Margie! Just doing this blog must take a lot of work... researching, answering emails and staying positive. You do a wonderful job and are a wonderful wife, mother, and all around person. We really, really look up to your family and the attitude you keep while going through such trails. We hope and pray that Ryan will soon be recovering from these side effects. We are sure rooting for you! Somehow, we pray that all of this pain can be lessened and Ryan will soon be eating and walking around(and wanting to...poor guy)
Sorry for the long post. We love you guys!
The Varela's

Seth and Julie said...

Thank you so much for taking us all inside this fight with you.
My body and heart hurt just reading this but I am happy to see you FIGHTING for your life. I don't think any of us had any idea how gruesome it is to fight for your life.

Let me remind you though that the life you are fighting for is a good one. It belongs to my friend, and a man who comes from an amazing family and is in turn building an amazing family. Yep, this life is one of the best.

So keep fighting!!!

We LOVE you!

Peter and Brittany Merrill said...

Thank you so much for the post Margie, I want to come by and visit but I am not sure that it would be the best thing with all the stuff that could come with me from the VA. Keep it up Ryan just when I think it can't get any worse for you it does but you still keep fighting. Everytime my kid say their prayers even at the dinner table they are praying for you. I think those prayer are being heard. Keep it up.

Breanne BUsh said...

Your facebook status brought me to tears this morning! I don't know how you do it. You are one strong optimistic women I have so much respect and admiration for the way you have dealt with the last 6 months of your life. We love you and our praying for you and your family. We are teaching Aubrey to pray. Cason randomly clapped one night after prayer so now she claps. No "amens" are coming out of her mouth just yet. :D

Miranda said...

Wow, cancer does really suck. Is there anything that can cheer him (and Margie) up? What can we do? It will only be awful like this for a few weeks. Just hunker down and get through the next little while, and then it will get better. I know it seems like forever, but this is all temporary. Please let us help you!

Theresa said...

Wow, what one's body has to endure. Ryan wouldn't be where he is without you Margarita. Amazing. Thinking and praying for you. (FYI I am glad you are putting all the reality of what cancer is.... people should know)

Heather said...

Well, thanks for sharing all this information. I don't know how you guys do it!! Hang in there. Thinking of you.

Kim Harris Thacker said...

Thanks, Margie, for doing the Q and A. We know it must be hard to share so much of what Ryan (and the rest of you) are going through, pictures included, but we all love you guys so much and we really do want to know. We are praying that Ryan will feel well soon.

Mike and Lisa said...

In reference to your previous post..."If I could just..." I bet Ryan is thinking to himself "If I could just GET A BREAK" We're praying he gets one soon.

The Kindle Family said...

Thanks for all the extra info, it is nice to learn some of the lingo so you don't have to keep answering the same questions! Go Ryan!

Tanya said...

Keep up the fight! Go team Hess! Thinking of you!