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

October 2, 2009

How it ALL began... Part I

It was the beginning of February, Ryan had just celebrated his 29th birthday and he was coming down with a little cold. Well, with most chest colds, you take some cough medicine and decongestants, rest, and in a few days, you feel good again.

That never happened.

Ryan had this cough that would NOT go away. It got to the point that the cough was making him gag and then vomit. I kept telling him to go in and see the doctor, but he said he couldn't get any time off from work. If any of you know Ryan's work ethic and loyalty... he gives 110% and there was NO way he was going to take off work.

After 3 weeks of having a cough and dropping 10 pounds, we both knew something was NOT right. He finally made an appointment to be seen. Everything seemed to be okay and he was sent home with an antibiotic. He took the antibiotic and it helped temporarily, but within a few days, the cough was back.

We were now into March, down about 5 MORE pounds and Ryan was still sick. He had a routine appointment with his GI doc (he has Chron's) and we hoped we could maybe get some answers or more help with this lingering cold. The GI doctor had some lab work done and gave Ryan a stronger antibiotic, but otherwise thought that things looked good. Ryan took the antibiotic and again, it was only a temporary fix. A short time later, the cough was back ...and it came back WORSE.

(We are now into the end of March, beginning of April)

The cough got so bad, that at one point, Ryan thought he broke a rib- he had to hold his chest with each cough because it hurt so bad. He was still vomiting and losing weight. He did make an appointment to see the family doctor because he thought a rib was broken. The doctor ordered a chest x-ray and lab work. Although there was no broken rib, he did think Ryan had bronchitis. He was given some stronger cough medicine and that helped... kind of.
Ryan then started running fevers around 101-103 on a daily basis. During all the fevers, vomiting, and cough, Ryan was still caring for his patients and not really telling anyone that he was sick. BUT his coworkers started to notice his weight loss. He was about -20 lbs at this point. Ryan noticed that his urine was REALLY dark too, not just like he wasn't drinking enough water dark, but a DARK orange color. He didn't really think much of it though. At this time he also started having mild night sweats.

Then sometime in the end of April/beg of May, Ryan started having a pain in his side and he thought it may have been a Chron's flare up, so he made another appointment to see his GI doc. At that appointment, his doctor thought it was more like a pulled muscle from coughing rather than an intestinal issue. He had no answer for the cough or fevers, but after Ryan suggested, he did more in depth lab work to test some other things. The doctor said everything looked good, but his liver function tests came back elevated and they should keep and eye on it. The GI doctor had NO idea what could have been making Ryan have ALL these symptoms. After a little research, he called Ryan and said that he thought Ryan could be having a reaction to Humira (the drug Ryan was taking for his Chron's). He wanted Ryan to stop taking the Humira and see if over time, the symptoms got any better.

They didn't, they only got worse.

The night sweats were getting really bad, the vomiting had led to about a 25 pound weight loss and the fever was always around 102, sometimes up to 104. One weekend, the fever got spiked to 105-106 and stayed that way for a full two days. Ryan was miserable and his GI doctor was NOT returning phone calls. Ryan was so sick he DID take time off from work and when he went back in, his attending told him he needed to get another GI doctor. She gave him two names, two of the best in Tucson. He called Dr. Ismail and he had appointment later that week, on May 22nd.

*Part II coming tomorrow*


Q: Why hasn't Ryan lost his hair this time? **Why didn't his eyebrows fall out?

A: Ryan had 6 weeks off in between his last round of chemo and the chemo that preceded the transplant. In that time, his hair started to grow back, slowly but surely. Well, just today we noticed hair all over his is starting to finally fall out again. **As for his eyebrows, Ryan had a good set of eyebrows and the hair was VERY resilient. They definitely did get thinned out, but never leaving completely like many cancer patients undergoing chemo.

~Day 9~

Today Ryan woke up like most mornings, sore mouth, sore bum... the only difference was it was getting harder and practically impossible to urinate. Urine retention is one of the side effects of being on narcotics, like morphine.

So, they decided it was time to put in the catheter.

As much as Ryan didn't want it, it's been a good thing. It has made him want to drink more and its helped him feel more comfortable. And we want him as comfortable as can be...he deserves that!

Well, he did walk a total of 3.5 painful laps, ate some, drank some and showered. I know this may not seem like much... but for Ryan, anything other than sleeping is a lot of work.

So, YAY for Ryan.
Keep fighting my love.



LISA said...

It just amazes me how strong he is. He gives US strength. With all that is going on he still takes his walk!! The good minutes will turn to good hours and pretty soon just plain good days! May for now you at least dream of good days...soon Ryan soon the good days will be here! God Bless you, Margie, the kids.....

SmustysGirl said...

Good job Ryan! Keep up the good work on those laps... you've got some awesome strength! -Aleesha

Donna said...

What a punk that first GI doctor was not returning calls! Thank goodness you swtiched docs. Keep fighting Ryan! Kick that cancer in the butt!

Seth and Julie said...

I remember when you told me Ryan was sick and I remember being so relieved when you found out that it was a reaction to his meds. I thought everything was resolved. I still can't believe it turned in to all of this. Thank goodness you ended up finding good doctors who could properly diagnose Ryan's condition and are helping Ryan to get better.

By the way, I am just laughing at your description of Ryan's eyebrows. You go eyebrows...don't let that chemo tell you what to do.

Thanks for sharing the story from the very beginning. It will make it that much more awesome when we get to the happily ever after.

Glenn and Heather said...

Such a fighter. You both are amazing. Keep it up. We think about you all the time. Wish we could be there to give you our love and support.

Stacey Mom said...

You are in my thoughts and prayers, thanks for letting us all share in your struggle, and you and your wife's inspiring courage and strength. I pray you get some relief from the constant pain. Hang in there!


Aubri said...

I've had c bladder cath many times in my life and they aren't the most joyous but they helped. there was one time though where the nurse didn't deflate before pulling it out and it hurt for weeks! So Ry- always make sure they've let the air our before removal. Hang in there and look for the happy/good things everyday!

Kristen Ann said...

My symptom was also a cough that wouldn't go away. I had lymphoma too, but b-cell. Keep up the fight! We pray for you.

Tornado Alley said...

Thanks for sharing how things started out--wow, I didn't realize how much you'd been through before all of this. I'm glad that Ryan was able to walk, drink, eat, and shower! Great job, Ryan!
There were several talks today that I felt the spirit strongly and thought of you guys! Your trials are not unnoticed and we pray all of you will have the strength you need.

With love,
The Varela's

Jennifer said...

thanks for all of the great info in the most recent posts! I miss you guys.

Kim Harris Thacker said...

Margie, thank you for sharing all this background information with us. You guys have sure been through a lot. I had to laugh when you mentioned Ryan's eyebrows sticking around. His brows may be resilient, but his character is even more so! Here's to strength!

Mr. Burns said...

Thank You for your strength. It is hard to watch from a distance and feel helpless, but I am sure it is harder to watch at close range and feel powerless. I wish I could take it away from your family. CANCER is yuck, but obviously the Lord knew who would be strong enough to handle it. (Maybe not what you want to hear... but it is true... take comfort in the fact that whether or not you FEEL like you can get through it some days... the Lord KNOWS you can.)
1 question: Can he have anything other than ensure? Do they have him on the cancer diet (alkalizing? sugar free?) or does he just eat whatever they are serving?