I'm home!
Thank goodness Dr. K did not leave me over another weekend! Yikes, I might have tried to make a break for it. 11 nights inpatient is really enough!

I feel like I've been knocked down to square one. Low energy, low stamina, very limited low fiber diet. And the weirdest thing is I've been taking a nap everyday the last few days. I am not a napper!
I guess I should say I was not a napper. I can't make it through the day without one these days!

Mike, Michael and Maggie were all on mid-winter break last week and spent so much time with me! I'm so appreciative of them giving up so much of their time. Betty and Eva spent plenty of time up there, as well. We always have lots of good laughs when we are all together, no matter where we are! And you know what they say about laughter...

I had many other visitors at the hospital as well as sock and cap and card deliveries that were delivered to our home and brought to me by Mike. I had a wall of cards from the kids and had many a nurse oogle all over them. Thank you for your messages of love and healing!

Mike and I will meet with Dr. Kaplan on Wednesday to discuss the future. I have no idea what is around the next bend. For now, it is all about healing, healing, healing.

So thank you all again for stickin' by our side. We need and appreciate your support!

Love and Courage
Janet

I've been wanting to get this written and posted for days.
Last Friday and Saturday I felt lousy as expected,day 3 and day 4.  But by Saturday night, with Mike limping around quite well, I started feeling feverish. Ended up with 100degree fever. 100.4 sends you straight to he hospital. In addition I've started to get my old pain back, a little more and more. Not as intense, but there it is. I called the doc on call and after a good discussion we agreed I would pack a bag and go straight in if the fever went higher or the pain was worse but at that point I was feeling better just talking to her.

We made it ok through Sunday, though I wasn't feeling well at all. Monday morning we went straight into see Dr. K. They took my blood, checked my vitals, checked me out an checked me in...the hospital, that is! That was a week ago today, still here!

I've had such low energy, lack of stamina, and inability to focus my attention, that I just couldn't get to this blog! But I am here now and must try to keep it short just to get through it, you know that is not a strength for me.

First I had a CT scan.  The news was good.  All tumors shrunk a bit, not a huge amount, but going in the right direction, with the exception of one lymph node that grew a bit.

Then I had an endoscopy. No cancer from my esophagus, all the way down to my duodenum! My esophagus, where I feel most of the pain, looks great, no problem.  My ulcer in the duodenum is healing nicely, there is scar tissue, the ulcer is much smaller, and ZERO coil sighting! It's in there or its gone.

The trouble is in my stomach, no cancer but the chemo beat the hell out of my stomach lining. It's called erosive gastropathy.  Initially I was eating small amounts of gut friendly food: kefir, yogurt, broth. Sometimes I might have pain, sometimes no. Then we all started  thinking back to September
2014 and what finally healed my ilium was no food at all.  So one night I was having a little yogurt and felt immediate acid reflux and that was my ticket to no food. I have to let my stomach lining heal. I have a neon yellow green bag of yum pumping nutrients into me. On occasional bag  of lipids and then this and that and the other.

There have been other misc tests and results, another Echo, a chest x-Ray, because I was having a hideous cough. But I will spare you all the details. Mike and Betty and the kids are up daily helping me get through this chapter of the fight.

Heal my stomach-eat food-then we'll talk next steps.
That is all I can muster for today.
Teachers and kids enjoy your week off!
Love to you all!
Xoxoxoxoxoxoxoox
Janet
PS oldest iPad around, so excise lack of edits, etc.

Good day my friends.

Today is day 3 of my cycle and I’ve been pancaked in Maggie’s bed listening to podcasts, meditating or just being. It is really about the most I was able to do all afternoon. But I missed my high energy day, yesterday, to post and I want to let you know why I was too busy to sit at this machine.

We had a turn of events here, I call this episode:

Mike’s Left Foot

Mike has had foot trouble for years. I will spare you the details and let him lay them out in his upcoming blog, or maybe he’ll do a podcast, not sure. But Saturday his second toe on his left foot (a really long toe, as long as my pinky finger, actually, I’ve compared them) was really heating up and bothering him. Red, puffy, sore, angry and sure enough at one point up crept that little red line of infection. OK, time to go. We called the doctor in our family, Carrie, who is not really a doctor but a medic for the Seattle Fire Department and told her he was going to urgent care. As Carrie is known to do she said, wait, let me see it. She came over quickly (she is conveniently living a block or so from us at this time) and said skip urgent care, go to the ER. So Mike took a solo trip to Swedish ER on Saturday evening, maybe 6 or 7 pm. It was not busy and for an ER visit not too bad. They gave him antibiotics and said if it gets worse come back and go see your doc on Monday.

It seemed to get better, the line was receding, that’s good. But on Monday Seattle got slammed with snow, 6-8 inches in our hilly West Seattle and when Mike called the doc in the morning, no docs had shown up! We hemmed and hawed and then suddenly it was clear to Mike that it was getting worse. Carrie came down again and off they went to the ER. She would make sure they did it right this time! So the ER was not so busy and they got into a room pretty quickly. They decided they needed to do a culture (Carrie was frustrated they had not done that Saturday) and start IV antibiotics. Over the course of the day they decided he needed to be admitted to continue the IV and the podiatrist that came in thought he might need some tissue removed. 

The ER was not busy but the hospital was slammed. There was no room in the inn. Mike was in the little ER room from maybe 10 or 11 in the morning until 8 at night! He felt lucky to have a room, he said there were others lined up in the hall! Luckily??? he had an unknown infection that makes him a bit of a biohazard so he needed to be isolated. 

Everyone agreed that the ER, the hospital in general was no place for me with my blood counts fluctuating. So we called and texted, a lot! The kids showed up around 5 or 6 and stuck with him until they finally had a room for him at Swedish Orthopedics Hospital, just a few elevators and sky bridges away. He got into his room about 9 I think…finally! All day stuck in those tiny ER rooms! Yikes! Then he found himself in one of the newer wings of the Swedish massive maze with a big room, a nice TV, a good view! Worth the wait, I’d say.

They’d taken an x-ray in the ER but in the middle of the night Mike got swooped back through those sky bridges and mazes for an MRI. On Tuesday the podiatrist, with new information and a little probing of the toe (gonna spare you the details here…you are welcome!), determined the infection had crept into the bone, but just the tip of the bone and they would need to amputate down to at least the knuckle. Dang! And I’m stuck at home in chemo land! 

On Tuesday morning Betty came up and gave me my booster shot. She watched a youtube video and Carrie gave her some tips (Carrie was working or would have happily given me my shot) and Betty did it like a champ! Yay for Nurse Betty! (And Terri, thank you for your offer, but we decided we could do it in house, but I so appreciate your offer!)

So on Wednesday, my blood count was good, I had an early appointment and all went quickly and smoothly and Dr. K cleared me to go see Mike. So after chemo I walked what seemed like 1/2 mile through the maze that is Swedish and found him with his mom and sister Lisa. It was great to be able to visit. Surgery was scheduled for 6:00 pm. I had to go home to take care of some business and so I left about 2:00. Michael came to pick me up, I was not quite ready and it took me awhile. We were really hoping to see him in pre-op but I’ll tell you, traffic Wednesday evening, in the dark, in the rain, it was just awful! But, it seems traffic from Ballard, where the surgeon was coming from was even worse! So we made it in time and got to visit with Mike in pre-op. He was in good spirits. We met podiatrist/surgeon 1, and the anesthesiologist. They were friendly, easy to talk to and eased our worries. Podiatrist/surgeon 2 was seriously stuck in traffic. 

They shooed Michael and me out to get Mike into surgery. Later we found out he came back out from the surgery room, cause of, you guessed it, traffic! Mike finally went under for his surgery about 7:00 and he said he woke in recovery at 7:25. Now that is some good, efficient surgery! He was up in his room with Michael, Maggie and I waiting by 8:00, and he was looking great! They used some kind of block to keep his foot pain free and gave him propofol which in my experience, and with Mike, too, you go out quick and come back quickly. Perfect. His foot was wrapped up well and he was able to use a walker with about 75% weight bearing. That’s pretty good! We stayed a bit too late (I was on my steroid high) and finally went home by 10:00.

Thursday morning, yesterday, is my day 2 when I have all that energy and get so much done. I started doing a few things around here with plans to go up to Mike around lunch time. About 9:30 he called and said he would be released in an hour or two! Yikes! I did what I had to do to get ready to go and headed up as soon as I could. When I got there the nurse was going over the last  of the paper work with him. I asked if we took the walker home and he held up his cute little shoe/boot and he is allowed to walk with as much weight bearing as he feels comfortable with. Wow! They don’t mess around! 

Mike is doing great now! He is spending most of the time on the couch with his foot raised, and that is what he should be doing. He just took his first pain pill of the day. So, he is clearly healing. He is going to a follow-up visit and even though it is day 4 for me, I’m going to bundle up somehow and go along. We’re a team, for better or worse.

This will be a lay low weekend for sure. A sick game of survival really, The kids will be around to support us and we have some friends lined up next week to bring us food.  So, survive, we will because of all the love and support we get from family and friends.

Sending love and peace to you all.
Janet

Today's Steroid Induced Babble

I really wanted to rock the bald this time. I see those women and they just look so powerful. Well, first of all, it’s just too damn cold for that, and I run cold anyway! But what else is true is that it is pretty patchy right now. IT (my head) is completely bald right now in the spots where hair fell out. So there are patches of bald but mostly nubs. Those little boy, irresistible shaved head nubs that I used to rub right up! Those faces popped out so beautifully when their heads were shaved. I hope their little heads were not as sensitive as mine. It feels like the tough side of the velcro and is very sensitive. Shirts on and off, hats on and off, I have to brace myself each time. It’s getting a little better everyday and I’m hoping at some point the nubs and the spots evens out. But until then…hats for me! Plus, most of those girls who rock the bald, well, let me just say, they are younger than me! I’ll leave it at that.

I went in to Swedish on Wednesday for my shot of Granix to boost my white blood count. It worked! So Thursday I had Treatment 1, Round 2. I had a later appointment than I like to have, starting at 11:15. By then you can count on a back up. I had taxol and cyramza which cannot be given simultaneously and each take an hour. So between the 3 stops we have to make (blood draw, the good doctor, then treatment) with back ups all around, we had a 6 1/2 hour day! Yikes! I was planning on going solo but Mike insisted and I am grateful! It was a long day. Once again, the nurses there…I cannot say enough good about them. When we were walking out, Mike commented to me, and this is after 6 1/2 hours, he said, “The prerequisite to work here is to be a nice person.” He is right. They are positive and just the right amount of chatty and easily available and knowledgeable and so very, very kind.

I got 50 mg infused Benadryl which helped me relax a while during chemo. It was lovely. I closed my eyes and visualized the healing going on inside of me. I listened to a Tara Brach guided meditation and it was perfect. But I had a few more hours to go. Mike caught up on Vikings and I like to read all the New Yorker magazines I can find. I found a recent one and read an article about Wall Street that just pissed me off! Then I had a political rampage on Facebook. Couldn’t stop myself. I’m getting chemo, I can say whatever the hell I want…right!

Before the Benadryl I get an infused steroid. Puppy uppers and doggie downers I call the combo, remember the old SNL sketch? On treatment day, I know the steroids keep me up late so I just take my whole game into Maggie’s room. I have my diffuser, my kindle (new for me…loving it), my iPad, my phone and just go with it. Last night I planned to watch a movie but ended up breaking my hard and fast no FB in bed rule and continued my political reading and sharing until maybe midnight! Yikes! Then I was awake at 5:00am.  After trying to go back to sleep and failing I listened to a great podcast, "On Being" with Krista Tippett. This one was an interview with John Lewis. It was fabulous and I learned details about him that I really didn’t know. I finally got up at 7:00 starving and had a little breakfast went back to bed and back to FB! Dang, I binged in the last 24 hours!! But this time I also made phone calls. Called 3 Senators including John McCain. It’s kinda cool to call Senators. I like this. I emailed him too, and told him about the magic that happens when all different kinds of kids with differing abilities are in the same classroom…thinking of course of Ian and Mason and Aliza and Aiden, especially.  But there are many, many examples of magic in my public school career. After I pulled myself off FB I haven’t checked politics again today, so I have no idea if I was too late. I hope not!

I’m trying every day to get in some exercise. Something. Everyday. Move. Breathe. Stretch. Yesterday with a beautiful morning and a late chemo Wilson and I got in a 45 minute walk. I saw an eagle fly overhead toward the end of our walk. Always a good omen!  Today with the rain and steroids I did a long stretch on the treadmill and to break my political obsession I listened to a fabulous This American Life all about coincidences. It was completely compelling and enjoyable and made my treadmill time fly by. I came upstairs and did my weights and pilates and then a 20 minute yoga session with youtube. Steroids. I get it! Tomorrow I get to see Dr. Standish but other than that this weekend I will crash. I will try to at least to not lay in the same place all day long. I will stretch at least a bit. But I’ve learned this cycle well! Day 3 and 4 are my down days, and that is what I’ll be doing…I’ll be down, physically at least. And I don’t really mind having a blue day. Its like a good rainy day, part of the balance.

From Tara Brach I will share this mindfulness message:

“Rest your mind in what is.”

That is one of my goals. Reflecting what is real, not letting my mind get ahead of today, now. Now I feel good. The rain is peaceful. I am healing.

Sending you love 

Thankful for your love and support

Always and Now

Janet