Chutes and ladders..
I just went down the big fat slide in the chutes and ladders version of gut healing...had to take lomotil...back to clear liquids :-(
No chance for a Wednesday exit....Thursday would be a reach I think...my eyes are on Friday!!
Think healing thoughts and think Friday!
Xoxoxox to you all

Seduced by grilled cheese...
And damn, I have to talk about poo again...

I know that wheat bloats me and as I was able to reintroduce food I had said to myself, I'll just lay off wheat! No brainier! Then yesterday, gray, rainy, 3 week anniversary of my hospital admit date...well let's just say I lost my mind and ordered grilled cheese. Here's what the menu says "comforting grilled cheese...cheddar cheese on white bread grilled to golden melted perfection."  How could I resist?? And white bread isn't really wheat...right? Damn....

All afternoon, evening and night I was bloaty and gassy then my poo just kept getting a little less formed, not all the way back to the  D word, but not good. So today is a do over for yesterday. I hope I didn't move my exit date but my guess is it won't be tomorrow, so hopefully Thursday, and if it is Friday, well so be it. I have to be a patient patient!

So here I am, taking it easy on my gut, rebuilding and healing.
I am getting some exercise in though nearly everyday, walking laps around the floor, working on a spin bike at the end of my hall, doing some of my Pilates and some of my PT work with bands. I turned to jello those first 2 weeks and I have to build some muscle back!

Headed home soon...I'll keep you posted! Love to you all!
Janet

Good day to you all!
The progress continues! Today I'm eating food...real food!!! I had some scrambled eggs for breakfast and grilled cheese and chicken noodle soup for lunch...like a real person.
This implies (and this will be my last poo report) that I am going real poo! Enough said!!!

So now it is a matter of time. They halved my "feed bag", and I'm completely off anti-D meds! I only took a .5 whatever of Ativan at bed time, no other meds at all (I'll miss you tincture of opium!!).
I asked the doc when I might go home and he said Wednesday or Thursday!!! Today is exactly the three week mark, so I really am more than ready to head out and all the way back to west seattle!

My sister Kathy is planning to come up from Boulder for a few days, at least, to help us out at home. Mike and Maggie can continue to work and I'll have a keeper to make sure I do not over do it, and we'll a grand time as well! I'm looking forward to hanging out with her, for sure!

On the cancer front, Dr. Kaplan said today that we'll do nothing this week. Any scan I would take would require a nasty beverage or dye that would give me, guess what?  Yep, diarrhea. So no talk of cancer this week. I imagine next week or very soon we'll have to find out what is going on in there. I was convinced for a while that the chemo was definitely still at work, but now, I have no idea what is going on in there, and we'll just have to wait and see. Roz has kept the butterflies on the job, and I'm open to all your prayers in any form you might offer them, thanks!

This weekend was awesome and exhausting!! Thanks to all my visitors, it was so great to see you and get caught up! But it did wear me out! Last night after I booted the family out I just sat in my chair here for a few minutes with my head in my hands...my nurse Kate came in and was worried to see me like that...no, I'm great!! Just happily tired! So,thank you all, that will carry me far!
Love to you all, see you soon in west seattle!
Janet

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!

Some better news...

Maggie here again! My mom is still in the hospital, but we received some good news today. She had her endoscopy and partial colonoscopy this afternoon and both came back showing NO NEW CANCER GROWTH! There was a chance that something new had snuck in and was causing all of her new symptoms, but that is not the case. Nice try cancer. Not this time. The GI doctor said that her colon looks like a work of art (to which she added, “maybe a Jackson Pollock,” and Kaplan said “more like Andy Warhol”), and Kaplan said that her stomach looks almost normal. THIS IS GREAT NEWS! Clearly I don’t need to spell that out for all of you, but I’m reveling in it a bit.  

So that being said, we’re not completely out of the woods. She’s still not feeling very well (cramping and diarrhea have lessened but not stopped) and she is spending at least tonight (probably tomorrow and maybe more) in the hospital. Basically she will be there until Dr. Kaplan thinks she can eat and drink enough on her own to be comfortable at home. Also the diarrhea probably has to stop first. She hasn’t had much to eat at all in the past few days, and she spent most of today fasting for her endoscopy. After the procedure she was able to eat some jell-o and yogurt. Her appetite is coming back, which is great! During the procedure they took some biopsies and cultures to try to figure out a bit more about what’s going on in there.  From what I understand, it’s either a reaction to the chemo pill or an unfortunate viral infection that she picked up.  Hopefully the tests from today will tell the doctors what they need to know, but right now she’s just waiting to heal up.

Thanks again to everyone! This is not an easy time and it’s always a comfort knowing you’re out there.

Not so great news...

Hate to disappoint, but it’s me (Maggie) again. I’m not nearly as eloquent as my superhero mother, but I will do my best!

I know what it’s like to feel disconnected from what’s going on, checking the blog constantly, hoping for an update. I can empathize.  So here’s a slightly more detailed update, picking up from Tuesday...

We were all riding the tide of happiness after finding out those fantastic results on Tuesday. On Wednesday, Thursday, and Friday mom was feeling pretty good. As I remember she was having some of the typical post-infusion stuff (lighter appetite, sensitive to cold, minimal nausea), but nothing out of the ordinary.  Michael came up on Friday night, which was great!  On Saturday mom was having a new side effect. She seemed to be retaining a lot of water in her hands and feet, making them puffy, swollen, and sore.  She was also feeling a bit crampy in her chest and stomach.  She called the on-call doctor and started icing her hands, which seemed to help a little bit.  Sunday, the swelling in her hands had gone down, but her stomach was much worse and she was having bad bouts of diarrhea (I’m not having her proof read this and I don’t know how much detail she usually puts in so, Mom, if you ever read this, sorry if I’m over sharing!!)  She was feeling pretty miserable and we should have called the doctor but, in her own words, she’s always trying to play the martyr and didn’t want to bug him (we’ve learned our lesson!)  On Monday morning I went to work and called my dad around noon to see what was up.  At that point she was feeling quite a bit better and had even had a bit to eat.  Shortly after that phone call she had even more intense diarrhea.  Aunt Carrie was on duty in West Seattle and was at the house at the time, so they went to the hospital in the MedicOne aid car.  Now I’m a little unsure of the details of their arrival and admittance to the hospital, but I do know that by the time I called again after work, she was up in a room in Swedish receiving IV fluids.  I came home after work to collect a few things and then headed out to the hospital.  She seemed to be doing a lot better and was even eating a little bit (thanks for the soup Joe!) Betty came by after work as well, but we eventually left mom to sleep.  

This morning Dr. Kaplan came in to check on her, getting her set up on various meds to help with the side effects.  The consensus at this point is that the oral chemo has damaged her stomach lining, leading to the diarrhea.  She’s off that chemo at the moment and right now they’re just trying to find the right combination of things to help the symptoms.  Today did not go as well as yesterday.  She couldn’t keep much food or water down and was in a good deal of pain with the cramping.  She’s staying in the hospital again tonight and Dr. Kaplan is coming in the morning.  If she doesn’t get better tomorrow they’re going to do a scan, and maybe even an endoscopy if need be after that.  I’m going to go in the morning before work and see how she’s doing.  You all know how strong that woman’s will is, but I can take a day off if that’s what needs to happen, right? I’ll play it by ear. My dad is going to take the day off too so she will not be lonely!

So this is a set back. It’s tough, but not all bad. First, we think we know what’s caused this, and she is already off that chemo so now we just need some time to heal.  Second, the tumors shrunk! This stupid poop can’t take away from the good news we got on Tuesday.  Third, she’s exactly where she needs to be, getting the help she needs when she needs it. 

Our lovely Janet needs to rest so I’d be happy to field any questions people have as best I can. Feel free to email me (mjoliver16@gmail.com) or text me (I’m not super into the idea of putting my phone number on here so if you have it or can find it, go for it! Otherwise I should be just as easy to reach by email). I just want her to be able to relax as much as possible.

Thank you all for your help along the way!  She has such an incredible support system. Everyone has been overwhelmingly wonderful and there aren’t enough words to express our gratitude.  

Guest Blogger

Hello Blog Land!

Maggie here on for my mom.  On it's mission to kick cancer's ass, our dear friend chemo has caused some collateral damage.  Janet hasn't been feeling too great these past couple of days and has asked me to let you all know that.  We are all trying our best to look on the bright side: this poison is working! She will be back up and running as soon as she can but until then we are continually appreciating your love and healing thoughts.

continued from yesterday…

…and thanks for the necklaces and charms and the god’s eyes and the magic mineral broth, and the fuck cancer voodoo doll and the fuck cancer salmon charms, and the hats and scarves and scarf hangers and the plants and flowers and the qi gong lessons and the yoga sessions and the fairies and the butterflies and the candles and the mugs and the beanie baby bear and the glass heart and the cards and the tree with all your thumbprint love and the books and the socks and the flowers…

Really I have not been ignored! You all are awesome at sharing the love and propping a family up!

Talk about highs and lows and roller coasters! Monday and Tuesday held quite the example of a low and a high in those 2 short days. 

Poor Rudy, we miss her so much. I can’t help but think she took the fall for me. It feels that way. In some Pacific Northwest salmon stories, the salmon are salmon people in their village underwater. When they return up river they are offering themselves to humans. And as long as we respect them and their home, they will keep offering themselves. I feel like Rudy offered herself to me. It was an honor and a joy to be her human mom.

Then on to Tuesday…I really don’t think I’ve ever had that much anxiety in my life. I had a near panic attack and have a heightened empathy for those with panic disorder. It was no fun. I had to keep summoning Roz’s red butterflies (the color changes from time to time),to simmer me down. When I was getting the port accessed I just had to keep my eyes closed and see the butterflies. They were gorgeous, powerful, and the shades of the most vibrant, brilliant reds. So strong, they got me through some tricky moments…thanks, Roz!

But here is a coincidence…another coincidence! 

Eva had to leave on Monday but Michael had work on Tuesday morning in Seattle; a crane to inspect downtown. It happens to be the crane right next to Swedish. When I was in the hospital there was construction going on across the street. Little Kincaid and Gideon loved watching the construction while Jennifer and Allison visited. The crane was in that spot! I get a text from Michael mid-morning that he could see into the hospital room. 

So while waiting for our visit with Dr. Kaplan, in his waiting room, what could we see…Michael’s crane! Then while in the waiting room, waiting for chemo we could walk out onto a balcony and watched the crane!  We never actually saw Michael up on the crane, which was probably better for my anxiety as it was a rather blustery day! And then of course once we got a chair for chemo, we had a chair with a view of the crane! There are a lot of cranes in Seattle right now and there are lots of windows and waiting rooms at Swedish…just another  crazy coincidence in this story!

When Michael got done with the crane work he was able to come join us for lunch. He visited us for a bit and we got to revel in the good news! He had to leave as he was due back in Portland today, and we were so glad to have a little time to celebrate the good news with him in person!

Maggie was at work all day and instead of going home on the bus she came up and was able to end our chemo session with us. It was great to be able to give her a big hug so soon after hearing our good news and listening to her teacher stories made chemo go so much quicker!

It was a late session at chemo. I think we got out of there after 6:00 sometime. We made a quick stop at PCC and by the time we got home it was late! My head was spinning from joy, exhaustion and chemo as I wrote that quick post last night. It was the best I could do at the time…but here are a few number details from the report:

“The area of previous mass like appearance of the neck/body of pancreas not as evident on today’s exam, with normal pancreatic duct width. Posterior gastric wall 1.0 cm now, 1.4 cm previously.”

“The large lesion in right lobe of liver subcapsular lateral to the gallbladder fossa has decreased in size currently 2.5 x 2.2 cm, previously 3.7 x 4.2 cm”…that sounds pretty good right?

“Hypoattenuating lesion more inferior to the larger lesion in the right lobe also decreasing in size, now 0.9 cm, perviously 1.5 x 1.8 cm.”

“Inferior aspect of the anterior margin of right lobe of liver previously hypo attenuating lesions with solid imaging characteristics and hyper metabolic on PET scan now subtle, 6-8 mm in size previously 0.9-1 cm in size”  

Those are the highlights. There were other area that were stable, but that’s ok, we are focusing on the positive! It’s still hard to believe!

I’m feeling pretty good today and now that I know the chemo is working I laugh at the side effects! Bring ‘em on!!

love and life

Janet

WOO HOO!!!

I have no words that adequately express our relief! Dr. Kaplan came in, said “Good morning.” and gave us a thumbs up. Then he described how each tumor had shrunk, some by nearly a half!!! Such good news!! The plan is to keep on keeping on with this chemo, so we celebrated our success with our favorite poison, and we just got home from the hospital!

That’s it for now…short and sweet!  I need to curl up with a nice cup of tea. Just wanted all of you to know as soon as we got home.

Thanks for all your love and support and tea and chicken noodle soup and lentil soup and fresh veggies and...

Feeling joyous relief and love!

Janet

Here is one of my favorite pictures of Rudy at our chalkboard wall, and a couple more from this summer. She was so cute! She was a dear girl. In the end she went peacefully with me, Mike, Michael, Maggie and Betty by her side. We miss her.

Highs and Lows

First things, first…the pizza was yum! By Sunday night my appetite had improved quite a bit, just in time for pizza. Betty made a gorgeous salad and I really could not bring myself to eat any. But, pizza…I had my fair share!

The pizza oven and the party were a huge success. Mike, Michael and Vince manned the oven, but Michael really took charge and seemed to enjoy the work. Mike had made a pizza peel using some wood from he had here and some purple heart wood my brother Paul had sent back with me from Kansas City last year. The pizza peel was a little beefy and the boys got very creative in finding tools to use to work the pizza in the oven. In the end, they discovered that using cherry wood made the oven super hot and the pizza cooked and handled beautifully from then on. 

What a night! Eva had come up with Michael, and Nora, a dear friend of Maggie’s drove up from Portland as well. Maggie and Michael had each invited friends to join us and Lizzy and Vince had invited a couple of friends and a number of neighbors. Then it was us along with Betty and Jennifer and that was perfect! 

The pizzas were plentiful! Betty, Lizzie and I had all made dough to see what might work best. I’ll try to list the variety of toppings that we had available, though each pizza was lightly topped as that is what works best in the wood fired oven. Here are some of the toppings: cooked red sauce, raw red sauce, pesto, pine nuts, salami, italian sausage, crispy pepperoni, goat cheese, fresh mozzarella, goat mozzarella, manchego cheese, parmesan, feta, figs, honey, anchovies, onions, mushrooms, mixed roast veggies, basil and I’m sure I’m forgetting something! We had birthday s’mores to end the evening. The pizza and the shared neighbor party was a huge success and a blast! First of many we hope!

The weekend is winding down. Nora and Eva headed back to Portland. Michael gets to stay one more night. I’ve had plenty to distract me from thinking about possible outcomes tomorrow. I’m assuming I’ll continue on chemotherapy of some kind or another, but that is just an assumption.

I’m sorry to report that our Rudy is doing poorly. Yesterday she seemed quite off and today even more so. We are not going to make her go through another night, she is in too much pain. She will eat her favorites, pumpkin, banana and peanut butter, but she won’t drink any more water. She is showing some other signs that she is at the end of her life. She has been such a trooper through this. She has had some bad days and then rebounded nicely, but she has gone on with this growing tumor long enough.

I can’t even try to make sense of the timing of her illness and mine. It is just too sad. I’m going to spend the next hour rocking her before we finally call the doctor to come here or we’ll take her in. 

I’ll let you all know what we find out tomorrow. Requesting extra prayers….some for Rudy and some for me.

lots of love

Janet