Good Sunday morning!
Lots of progress here, I'm so happy to report!
I've had no "D" since Thursday and on Friday I had a small actual formed piece of poo!! So sorry to have to give you poo details...but that is really what it has come down to!
Dr. Goodman is the doc of the weekend, yesterday he put me on clear liquids, I said I was too scared, but he said to go for it. So yesterday I had 4 bowls of broth and a number of gummy bears!
This morning he came in again and upped me to full liquid. This adds milk products, which I'm going to avoid for now, but I can try yogurt again. I'm going to have cream of rice for breakfast and tomato soup for lunch because I do need to advance my diet to get out of here! So, wish me luck that the food goes in and does what food is supposed to do! Handling food intake and output correctly is my ticket out of here!

I had such a great day yesterday with so many visitors!! Oh my, it felt a little like one of our old parties where so many different parts of our lives come together! Thank you all for making my day! I thoroughly enjoyed it!

Happy Sunday everyone! Thanks for all your prayers, thoughts, positive energy and love! It's working!! Love to you all!
Janet

Good morning!
I'm acutely aware that as I lay here there are several angels getting ready to clean my house. First of all, thank you, thank you, thank you. But, you all know that I am a bit of a control freak, so,this is really freaking me out!! Cancer is one hard core teacher and letting go is one of the lessons. All I really want to do is apologize to all of you in my house for any clutter and extra work you find but I'll try to let it go and just thank you, thank you, thank you!!! We appreciate any thing you get to and please don't worry about anything that does not get done. Extra thanks to Gillian for organizing this...good luck over there!!

Update...I'm feeling pretty good. I've had an extra fabulous nurse the last couple of evenings/nights and she has helped work my anti-D and sleep meds to be more effective. I'm only taking lomotil a few times a day, taking Ativan by IV for sleep so no ambian to potentially upset my gut. And then starting last night at 4:00am she gave me the tincture of opium which is a strong anti-D med. Now, so far today, no D!!!! She and I were very excited that we might have come upon the right schedule and combo so my gut can finally heal completely!  Hope.....

This morning early Dr. Kaplan came in, likes the progress and has put me down for 3 more days of the same. So, I plan to be here all weekend with no food to finish healing this poor sad gut of mine. He talked about a potential scan early next week to check and see how the cancer cells have been doing during this time of healing. So, I have a long weekend ahead of me! I'm open for visitors. We can't have flowers up here and I can't eat so you can just drop in for a few minutes to say hey....that would be great! Hope to see some of you!

So happy Friday everyone! Have one for me, moonshine committee, I'll be thinking of you!
Love to you all
Janet

I'm still here! I can't believe I'm still in the hospital....but alas, here I am. It's still a bit of a puzzle what is going on here; they are not completely sure what or why this happened with my guts. They could not find any bugs or disease, it is kind of by default that it is a side effect of the chemo, but that is really what makes the most sense to us. Yesterday morning the doctor said he still wasn't convinced, but the fact is, here I am.

I feel fine, no pain, no cramping, so that is the good news.  The bad news is without medication I just can't stop having diarrhea. It's not a lot, it is actually just small amounts, but there it is. 

I don't really remember my first week here, I was very ill and out of it. I'm not actually even sure when I started to come around, but at that point I definitely had cramping and pain and lots of  pooping. Now there is no pain, no cramping, just bits of the D word. Two days ago they took me off food and it seems to have been the right move. I was not eating much, actually just small amounts of very healthy food, but it seems no food was the right way to go. I'm improving but it is definitely up and down, still. I think a few more days with no food will really start to let my guts heal. 

That is where we are now....kind of a waiting game at this point. Don't eat...heal the gut...be patient. But 18 days in the hospital (and still counting)...we did not predict this!

I cannot thank you all enough for the support you have given to our family to get through this turn in the road. It has thrown us for a loop and so many of you have been here in so many ways to help catch us and not let us fall. I'm so grateful for you all.

And if I can figure out how to post this from my ipad at the hospital then you all know I'm making some kind of progress!!

Love to you all from the 12 floor!

The chalkboard wall is updated and ready for Janet's return home. It still won't be for a couple of days, but she is getting better by the minute.  Everything is still running right through her, but the steroids seem to be working because she definitely feels better. Hope everyone is having a lovely weekend so far.

What we’ve all been waiting for!

Some answers! Sorry to keep you all waiting, you’ve been so patient and we’ve felt all of your healing vibes our way. Mom had her colonoscopy on Wednesday. She has slowly been losing blood through her stool and today she got a few pints of blood replenished, so by the time I got to the hospital after work, she looked much better than I’ve seen her in the past two weeks. Much more energy, much more agency. 

Here are the answers: the biopsies from the colonoscopy showed that the root of the problem is in her terminal ileum, which is at the end of the small intestine, right before the colon. She was started on steroids today and slowly but surely things should start to clear up in there. So twelve days later, we have a plan of action and some hope of getting out of that tiny room. 

Michael’s back up from Portland and we’re excited to spend the weekend healing with our slightly less groggy mama.  As Pheobe said, “Salmon never give up,” and this salmon certainly isn’t letting this little set back get her down.

Hoping to only give more good news from here on out!

-Maggie

September 16

I'll give a quick update tonight because I'm exhausted, but I know there are tons of you out there still checking daily and I want you all in the loop.

We're still in the hospital. The doctors still don't know for sure what's going on. It's either the chemo (but, according to Kaplan, would be weird if it is based on how this has played out), or a strange infection (but everything they are testing for is coming back negative), or some kind of colitis.  Colitis is basically inflammation of the colon.  From what I understand it comes in many forms and is caused by many different things.  It sounds like they're going to do a colonoscopy tomorrow to biopsy some spots in the colon and confirm this. Colitis is treated with steroids, which means we can't just start treating it (like they did with antibiotics) because if it's not colitis the steroids could make everything worse.

Thanks everyone for your support! I can't say that enough.

Maggie

P.S. On the bright side, the view from floor 12 is pretty kick-ass...

September 14

Maggie here again.  Today marked day 6 in the hospital and there really hasn't been much change in her symptoms.  Kaplan, the GI doctor Harper, and the infectious disease doctor have all been looking into what's causing this mess and are still fairly unsure.  Yesterday when we talked with Harper he seemed to think it was more likely caused by a bizarre infection, either viral, micro bacterial, or parasitic.  Today when we talked to him he was leaning more towards the chemo causing it, admitting fully that they really don't know. The more that infections are being ticked of the list, the more he thinks it's the chemo.  Nothing is off the table at this point though.  There is a medication that has been shown to work for people suffering from chemo induced diarrhea that he recommends she start on.  Even though they're still not sure that it is the chemo, he thinks it's better that we start on something instead of just letting this run its nasty course.  We just have to run that by Dr. Kaplan and see what he thinks.

Me, my dad, and Michael held down the fort at Swedish and had a few visitors.  We took a walk around the hospital floor in a wheel chair, and later by foot to watch a bit of the Seahawks losing in the family lounge.  My mom started on IV nutrition yesterday evening and it seemed like she had a bit more energy today.  She hasn't been able to keep in any of the food she does eat, so it's good that she's finally getting some calories.  The doctor did say that when you start on nutrition you have to stay in the hospital for at least a couple days, so she'll be staying put for a bit.  She's still cracking jokes and laughing when she can despite the fact that we keep receiving discouraging news.  It's tough but as you all know, so is she. Toughy girl, right?

Thanks so much to Gillian and Conor for taking care of the little Gertie dog.  This dog walking pair have been by like clock work and even watered our neglected hydrangea today.  THANK YOU!