Have you ever gone through detox? More power to you!

That was some kind of living hell. I really did not expect to have such serious, intense, long lasting annoying side effects from detoxing off of the morphine. I’d been on such a small amount, or so I thought and I’d started decreasing the amount slowly, I didn’t think much about the side effects. If there is ever a reason not to get addicted to pain killers it would be so you don’t have to detox. My most pervasive symptom was the jittery leg/body. I could not hold still. I’ve had bits of restless leg syndrome in the past, and this was restless leg syndrome on steroids. My whole body just needed to jerk and jiggle around. I had 4 nights of very limited sleep. One night I’m quite sure I could lay still for no more that 10 minutes then I had to get up and move around. I left Mike alone in our room and used every other possible sleeping surface to try and get comfortable. Bloody hell. During the day I had little to no energy. I wanted to walk to try and get some of this out of me. I walked Wilson 25 minutes each morning and then would collapse after that to catch my breath.  As soon as I recovered I did a few PT/pilates moves as I have got to build up some core strength again. MY goodness, I feel like a spineless wimp. From there I just coped through the day; doing a little here, a little there, collapsing and recovering and then hopping about on my jittery body once more. I did try some THC/CBD combos but without great success. I tried to eat healthy, but had very little appetite.

Finally toward the end of all of this I got an appointment with Dr. Standish. She sent me home with marching orders for epsom salt baths and some ayruvedic supplements, with in two days I started feeling better. But all in all the detox took nearly a week. And I was on a low dose…let this be a cautionary tale!!!

One of the things that finally pushed me over the edge and back into the land of the living was having company over the Memorial Day Holiday! Lucy (my sister, Kathy’s youngest), her husband Stephen and their boy, Hunter came to stay with us. They’d been to a big wedding in Portland so drove up to spend two nights with us. They got in Sunday and we spent the evening at Alki and then dinner at Elliot Bay. Monday we caught the water taxi and spent time at the market; lunch at Lowells, flowers from the vendors, the usual! Came back that same way and everyone except Lucy and Maggie came home for nap o'clock. The girls headed to Fremont, to explore Seattle a little more and to have some fun.So great to have family come visit! We were disappointed that Michael and Eva were not around to enjoy the visit; they were back East, Eva's brother just graduated from Brown and they were celebrating with her family! Congratulations, Eli!

Lucy is the first of her siblings to come this way since they’ve had children. I expect this to open the flood gate…come on Gilroys! 

HEALTH UPDATE

Tomorrow I am going to go see Dr. Mignone and he is going to fit me to a lovely heart monitor vest that I wear for 2 days so they can monitor me for 2 days straight. While I was on pain meds my heart had some funny moments and so they just want to be double sure that all is well. Ok, I’m good with that. Not like you have a backup heart incase one goes off line…right…at least not most of us.

I’m also planning to check in with Dr. Kaplan soon. He told me in an email since all those tests came back clear we would not have a scan anytime soon. Well, I am A-ok with that. I think we take a summer vacation, come back and get a scan and go from there. I’m starting to feel a teeny tiny bit normal post radiation, post pain meds, post detox. I would sure like to enjoy feeling a teeny tiny bit normal for a teeny tiny bit longer. That is my hope…fingers crossed.

The weather has turned again. It is beautiful. This Friday is Lou's Make-A-Wish Run. I'll be there, I'll be making lots of wishes but be doing very little running! Any Pathfinder alumni, you should join us! You know Lou's run is always a good day!

Love to you all. 

Janet

It is good news...just not THAT good
A post especially for anyone who has talked to my mom this weekend...

On Friday I told my mom that the endoscopy results came back showing nothing in the stomach or esophagus and the bits they biopsied were clear...nothing there! Good news...yes!

My mom interpreted that to mean that I had no cancer anywhere. Any easy mistake for a mom who wants the best possible news. But, we have not looked at the tumors in my liver since early April. At that time they were shrinking. I'd like to think they'll continue to shrink until they implode and maybe that has already happened. But, until the next scan, and I do not know when that will be, we'll just keep hoping and praying and visualizing for THAT good news!
love
janet

Good News

The short story is they have found no cause for the pain and the pain is diminishing everyday!

I guess that is absolutely the best possible outcome I could hope for. 

I had a CT scan (way back in April) that showed the tumors targeted by the Y90 were shrinking and they saw no cause for pain. Then an MRI, a bone scan and finally an endoscopy that all showed nothing. The 2 biopsies removed during the endoscopy were benign, “no worrisome findings!” Ok, I’ll take that!

The pain changed dramatically right after the endoscopy and has continued to change gradually since then. Prior to the endoscopy I had writhing pain, mostly in my chest/sternum. After the endoscopy the pain continued in the same spot at times, less painful, and usually a quick jab versus long drawn out pain. But, most of the pain started feeling more like nerve pain in my back, wrapping around my trunk; that jittery kind of nerve pain. Sometimes it would last a while, sometimes it was fleeting. There was no predicting but, the pain was definitely much less. Since the endoscopy I have not had to take dilauded even once. I was on morphine 3 times a day and I am weaning my self off of that. The last few days I’ve had some jabbing nerve pain that is usually in reaction to some movement I’ve made. For instance, the other day I was trying to go for a walk and with each step I felt a little jab in my sternum. Or I bumped into something and then had a nerve reaction in my back. It is like my nerves are on edge at times. I am going through the world “gingerly” so as not to upset my nervous system…weird! But it is working.

Last week I had massage therapy, physical therapy and acupuncture.  I've also found a little success with the 1:1 tincture of thc and cbd. I am determined to get rid of this nerve pain in the least intrusive way possible. My wonderful doctor of cancer (and he knows cancer, for sure) has suggested nerve blocks or nerve pain pills. Well, I would do those things if all else failed, but they are not going to be my go to solution.

Now it is Sunday. Friday night I slept 12 hours!! Last night I slept 10 hours and that seems to absolutely be the best thing I can do for me body. My nerve pain is significantly improved. I would say in the last 24 hours I’ve had one or two moments of slight nerve pain…almost nothing, almost gone!

Was the endoscopy a cure? Was that a coincidence? We have many theories, but it doesn’t really matter. I’m doing pretty darn good!

Thursday was Mike's birthday. The kids came over and we had a yummy BBQ dinner. I slow cooked a pork shoulder from PCC all day and it was the yummiest pork and had the least amount of fat than any pork shoulder I've ever cooked before! We had a great celebration!

Friday I joined my class, my sub and many parents on an extra special field trip to Tillicum Village on Blake Island in the Puget Sound. We met at 8:00 down at Alki to take the water taxi across Elliot Bay. We walked up to Pier 55, waited awhile, then boarded the Argosy tour boat: Spirit of Seattle to cruise out into the Puget Sound and over to Blake Island. On Blake Island is Tillicum Village, lovely beaches and trails, camping and picnic areas. No roads, cars, really nothing else! At Tillicum Village we ate a delicious alder roasted/smoked salmon lunch and watched an awesome Native American show with singing, dancing and story telling. It was great to see the kids, their hugs are like a good drug for me. They are clever, funny and such good friends to each other. I loved spending the day with them.

Yesterday we joined with our neighbors, had some friends over and had a pizza party. Some of the best pizza's yet. We are getting really good at this! Lizzie has perfected a dough recipe and I am close behind... I"m going to give my recipe one more tweak and one more try then I'm just going to use her recipe. We have such a great variety of toppings and the pizza combinations never end! YUMMY!

To say I'm pooped out, is an understatement! Today, my big plan is to post this blog and watch the last two episodes of the last season of Friday Night Lights. I've enjoyed that show very much. I'm going to take a break before I start a new series. I'm feeling pretty good right now so I'm going to make my way through a few books I've got lined up before I let myself veg out on another series.

Next weekend one of my nieces from Colorado, Lucy is coming to visit with her husband Stephen and their 3 (nearly 4) year old Hunter. I'm looking forward to having them here. We'll have a grand time. I just hope I'm feeling as good or even better than now, and I don't know why I wouldn't!

Have a great week.
Go gingerly through your day!

Love to you all

Janet

Post Endoscopy Rest Day

I was scheduled for an endoscopy today and earlier in the week I emailed the scheduler guy and used the word beseech and used the term deep dark pain and I got my endoscopy moved up one day. So, I had it yesterday. I’m so glad it is over with!

An endoscopy does not have to hurt, they don’t always hurt, sometimes they do. My first one was when I was admitted to the emergency room that day in late June 2014 when this nightmare began. That one did not hurt, as I recall.  What they saw in that endoscopy is what gave them pause, caused them worry and they proceeded with a second endoscopy which included some biopsies. That one hurt like hell. That is the test that made me feel like they were moving box cars inside my chest, I remember, while under sedation, grabbing at my chest and yelling at them to stop.

So, to say the least, I was not looking forward to yesterday’s test. I made it clear that I wanted the extra double dose of whatever they were serving up. I was worried about pain because the pain I’ve been feeling, when it is at it’s worst, is exactly where I remember the boxcars were being moved around. It is in the direct line of the endoscopy. Also, I’ve been on so many drugs, I know that I am acclimating to them and it takes more and more drugs to be effective against the pain. So, I made it clear. He said he would give me the maximum amount that he could give me while still keeping me alive and if he was worried I would stop breathing he would back off the meds. I agreed with that plan and down I went.

I still felt it. I remember repeating “It hurts! It hurts!” and I remember them saying, “You’re ok, you’re ok.” 

When Mike joined me in the recovery room I was still well drugged. I don't remember much but I know we talked to the doctor. (Dr. Brandabur, nice guy, the nurse said people wait months to see him, he looked a little like Kevin Bacon, totally looked like he was from the mid west and when he was a teenager he would hang out at the quarry…you know the look? That was my doctor yesterday.) But, I can’t remember much. I know he took a couple of biopsies, I’m not sure if they were from my stomach or from my esophagus or from where, but it  can take up to a week to get the results back. 

I still have not heard from Dr. Kaplan today, I’ll give him a call a little later if I don’t hear from him.

I called Paul (from the Y 90 episode) the other day to talk to him about the pain. He mentioned nerve pain and the more I think about it, talk to others and google it, the more I think that might be what is going on here. I know some nerve pain shows up in MRIs and nothing showed up in my MRI. But that does not mean there isn’t nerve pain. It just means no nerve pain was detected that day. I don’t know much about nerve pain, but I might be finding out soon…I’ll let you know!

I have a little time today and I’ve been wanting to blog about Mark Nepo, again. He is a poet, philosopher type and the book I have by him was given to me by my friend Janelle, from work: The Book of Awakening. I've quoted him in this blog before. This book stops me in my tracks on a regular basis. There are so many days I read the passage for the day and think, “YES, that is just what I was thinking about!” or “YES! That is just what I needed to hear.”  Sometimes I mark the pages to go back and read them again or pages I want to mention here.

For instance, my last day of work officially, was May 2. Here is what I read on May 1:

Burying and Planting

The culmination of one love, one dream, 

one self, is the anonymous seed of the next.

There is very little difference between burying and planting. For often, we need to

 put dead things to rest, so that new life can grow. 

And further, the thing put to rest—whether it be a loved one, a dream, or a false way of seeing—becomes the fertilizer for the life about to form.

Well I definitely felt a part of me was about to be buried. I needed to hear and begin to believe that it could be the fertilizer for something new. He goes on a little farther down the page…

There is always grief for what is lost and always surprise at what is to be born. But much of our pain in living comes from wearing a dead and useless skin, refusing to put it to rest, or from burying such things with the intent of hiding them rather than relinquishing them. ...We live, embrace, and put to rest our dearest things, including how we see ourselves, so we can resurrect our lives anew.

Well, OK Mr. Smarty Pants Mark Nepo…I guess you are talking to me again. He helped me let go of that job in a healthy way (or at least I’m on the path of that process) instead of continuing to feel such anger and pain about how it came to be.

I could go on and on, but I see by my internal clock that it is time for a nap! Wilson is waiting for me…

I hope you all have a good weekend and if your weather is as glorious as ours, I know you are enjoying it!

I will let you know when I learn something. In the meantime…

love to you all

Janet

The Guided Meditation That Rescues Me From Pain

This pain has been awful. When I look back I cannot believe how long it has been going on. I guess I’ve been in denial. I’ve wanted my life to be normal so badly that I have discounted this pain. Now I’m looking back, tracking the pain and the meds and it’s ridiculous!

It used to come on slowly, I could feel it creeping in over about a 15 minute period and sometimes I could catch it and stop it before it got too bad. It used to leave me alone in the day and wait until evenings.  Now it might start as early as 10 in the morning and there are times when it takes me right down, no warning, no warm up. I find I am writhing and I can’t get away from the pain. It is not at this level every time or every day, but there are days and there are times I need all my tools. I grab my fuzzy blanket off the couch, call my heating pad/pup, pop a pill if my schedule says I can and crawl into bed, plug in my headphones, find a guided meditation on my phone, cover my eyes and meditate. 

The app is called Insight Timer. It is free (though of course you can spend money for something once you are inside the app) and it has saved me. It has a menu of guided meditations. On the menu it tells you the name of the meditation, how many stars it has averaged, the name of the speaker (or if it is music or sound only), how many people have listened to it and how long it lasts. It allows you to bookmark favorite meditations. These meditations have allowed me to refocus and escape from the pain. They help me relax and cope during the day and fall asleep at night.

I recently learned that pain management was one of the sparks of the mindfulness meditation movement. It makes sense. This guided meditation guides me away from my pain. I definitely need the drugs, too, but this tool feels a little bit like a miracle! I’ve started practicing a bit of meditation on my own, but when I’m in pain there is no way I could do this without a guide. I am now addicted to guided meditation!

Cannabis

We are lucky enough to live in a state where we can easily get recreational marijuana and if we have a prescription we can go to a medical marijuana dispensary and get information (not medical advice) and a variety of cannabis products.

Prior to getting the prescription I tried a few products that I was told “would not make me high.” Right! Well I got high and I don’t like it! It freaks me out! I’m paranoid and quite frankly, a mess! I got a prescription so we could get a little more info and some alternative choices. Mike and I spent a good 30 minutes or so learning the difference between cbd and thc and how they work together, how they are used and some choices for us.

Currently I am looking for pain relief and no high. Different people have told me different things about if this is even possible.  I bought a tincture with an oil base and 1:1 thc and cbd. I just took 3 drops, she said I'd probably get a little high and I did, not too high, but definitely high.  I took it twice this weekend when I thought I felt some pain coming on and the pain did subside, but sometimes it does that anyway. I’m not convinced one way or the other that it helped with the pain, it might have, but it did make me high.

If it really does help with the pain I have a choice; I can use my tincture and get a little high or use more pain pills and lay on the couch and drool. Which would you choose?

I have a little bud that I am going to "vaporize" (I think is the term). It is only cbd, no thc, and my friend who gave it to me says it relieves her pain with no high.  I have another friend who is loaning me a vaporizer and I'll give it a try.  This is what I'm hoping for...no high  (or maybe just the teeniest-tiniest bit of a high, I grew up in the 60's and 70's after all!) and no pain, I'll let you know.

The Mystery Continues

Yesterday I had a bone scan; my bones are great! No bone issues, I did not want to imagine the cancer moving into my bones. Now I can shake that out of my head.

The next step is an endoscopy, which I’ve had at least 2 times before and it is not a pleasant experience. I imagine this will be where we find the answer. My appointment is not until Friday, though I am hoping they have a cancellation Wednesday or Thursday as I really don’t want to wait that long!

A Good Thing~Life Goes On

On Mother’s Day Maggie and Michael cleaned out my tomato barrels and garden boxes and flower pots and planted tomatoes, veggie starts, and seeds that I had ready. They brought beautiful flowers and planted them as well. I do have enough energy to water! Thank you children! Your momma appreciates you so very much!

We had a delicious brunch with the kids, Betty, Mike’s mom Dee and his sister Carrie and her son (our neighbor!!) Walker. It was a nice relaxing day with plenty of delicious food and time to sit and visit.

The weather here is stunning! The locust trees behind our houses, across the alley, that I can see from this spot at the table right now, are in full bloom and are as beautiful as I’ve ever seen them in our 18 years in this house. Gorgeous!

I hope you have the weather you prefer, wherever you may be.

Thank you my friends, it helps all of us knowing you are there.

Love to you all

Janet

Long Time No Blog
Part 2 (know as the yucky part)

The short story is that my tumors were and probably are still shrinking. However, I still have mystery pain that we are now trying to get to the bottom of...as it is still a mystery.
The other yucky part is that I was let go of my job (not that I didn't need to leave to heal~I most certainly did) but before I was really ready and without having a choice in the matter...

If you are not interested in the babble of the long story, you can stop there and be up on the basic short story.

The longer story, health first.
My pain has not gone away. While in KC I thought a break from work would help it stop, no  such luck. Before I left town I got a prescription for a Fentynal Patch, its a slow acting patch of pain killers you leave on for 3 days. It really didn't do much for me, even when taking extra pills for breakout pain. When I got back and started school Mike went up to the doctor's office for me and got me a prescription for a low dose of Morphine that I take every 12 hours, whether I'm feeling pain or not. Then I take the stuff I've been using already for breakthrough pain but take twice as much each time. Since that day there have only been 2 days when I did not take any extra pain medicine. Most of the time I take it twice a day and thankfully the pain usually holds off until the afternoon. Since Thursday the pain has been a little more intense and I've needed extra pain relief 4 times a day! On Friday, Mike and I talked with Dr. Kaplan and he's switched me to morphine every 8 hours instead of every 12 hours. He's also got me consistently on Dilauded  for breakthrough pain and supposedly they'll get into some kinda of therapeutic groove and I'll need less???
Whatever! That's kind of how I feel at this point. Though, I did have a much better day yesterday and especially yesterday evening! It is very much day by day.

I had an MRI on Monday and it showed nothing. All clear. So whatever can be diagnosed accurately with an MRI, I do not have it!

Monday I have a bone scan, to see if the pain/problem is in my bone. Kathy, my big sister,  just had one last week and said it is no big deal and not invasive. So, that is a good thing! I've always been curious about a bone scan, so now I'll get one!

And later next week they are in the process of scheduling me for an endoscopy. Maybe the Bone Scan will show what we need to know and I won't need an endoscopy. But I'm planning on one sometime next week.

I'll let you all know what I know when I know, the challenge now is NOT going to that bridge before it can be crossed.

School
This was my 20th year at Pathfinder. I've been working really hard with this group of kids, leaving it all on the field, as they say. And 1/2 way through my time in KC I got a big punch in the stomach from human resources right out of the blue!

Last year I did not work. I got full pay and full health care.  It counted as a year on my retirement, it was awesome and I could not believe how great the system worked!  I had the Federal Family Medical Leave Act to protect me and I also got to come right back to my position. This year, what I did not realize and probably should have is that I am no longer protected by FMLA. I would have needed to work 150 days  in order to be protected. While you are building your 150 days you can use up all your sick days, personal days and then 25 more days (non paid or paid through shared leave, it doesn't matter). If you use up your sick days, personal days and 25 more days, you lose your position. You are replaced, displaced, I'm really not sure. I know I'm not terminated, they told me that. I know I get to reapply for my same job next year. But I can't go back this year. I could be a sub, or they might find some position for me, but the bottom line is when you get a job, you have to show up to work or you lose your job. As bummed as I am, it actually makes some sense to me.

However the way I found out was just ridiculous! Shared Leave in our district is very confidential. Each time I am out I have to call a particular person at the "leave desk" and let her know that I will be out. She is the only one who can put my time in because she is actually taking it from one of my friends who donated shared leave to me (THANK YOU THANK YOU THANK YOU!!!!!).
While on break Hillary agreed to sub for me all 5 afternoons that first week back. I let my health leave desk know and she emailed me that after those 5 half days, I would have only one more sick day to use and then I would no longer be able to return to work at Pathfinder.

WHATTHEFUCKAREYOUSAYINGTOME????YOUARECOMPLETELYINCOMPETENTANDHAVENOTACLUEWHATYOUAREDOINGORWHOYOUAREEMAILINGWITHRIGHTNOWWHATANIDIOT!!!!!

I think that was my exact reaction. I remember it clearly, sitting on my mom's bed checking me email...hmmm, such a memory!!

I exchanged several emails with her, as you can imagine, but I knew I needed her on my side and know how to play that game! I started to think she wasn't making a mistake. I still did not understand, but she kept checking things and answering my questions incorrectly!

I texted my principal who I like too much to go on about his text. He was in Vegas and did not realize how his text had come across to me. Afterwards he was super kind and felt terrible. But at the time, he was supposed to be on my side and it left me without an ally. I was devastated.

Over time it sunk in and what helped is that absolute fact that I cannot work right now. I gradually used up my sick days for those first 2 weeks after break and now I am done.

We were fortunate enough to get our other fabulous sub we interviewed earlier this year. Anna comes highly recommended from someone I respect, so that is a good thing. She is young and energetic and seems absolutely to be on top of things. As we teachers talk she's got "it." We teachers know teachers that don't have "it."   It's important to have "it!"

I had an overwhelming and emotional last day. It was the first day of teacher appreciation week, so I was showered in flowers, cards, and love notes! So very sweet! I planned to come back a couple days later in the week to demo a few lessons for Anna, so at the end of the day I just said, "I'll see you in a couple of days". On Wednesday, I taught a few lessons and then when they were going in from recess I took the time to take each one in a special hug and let them know that I love them. It was not an easy day.

I'm not completely done with my job. I'm still helping organize and finalize some field trips. I'm doing the job we need to hire for: teacher's administrative assistant!

I have lots more to say, I've just been too busy to write. I have a few Mark Nepo quotes I want to share. I want to talk about cannabis. I even want to write about our wacky beautiful weather!
But, here I will stop for today. Happy Mother's Day to all the mommas I know who read my blog.

Kids are coming over to cook brunch and plant things in my garden. Betty's coming up, Mike's mom, Dee is coming down. It should be a lovely day.

Love to you all
Janet

Long Time No Blog

part one Kansas City...a nice place to start...

Between work and pain and so much going on I’ve had no energy or time to blog. There has been a lot happening and it may take awhile to catch up, 

So where was I…oh yes, Kansas City

I had a lovely, low key, visit to KC. I spent most of the time hanging out with my mom in the family room in my spot on the couch. It is one of my happy spots. I was happy to be there with no pressure; nothing I had to do, no place I had to go, just chillin’. 

I have a couple of very artistically talented cousins (all my cousins are talented in one way or another…not putting anyone down, now!) and I had a little time with each of them. My cousin Jim is a painter. He paints on location in different spots around KC. He particularly likes to paint places where the industrial world meets the natural world, especially older buildings/factories. His paintings are beautiful and he is a careful, thoughtful painter. I got to see one of his pieces that he had in the back of his car. He has shows now and then, but he is methodical and takes his time finishing his work. According to his mom and sister, he is also extremely “picky” about what he thinks is “good enough” to sell,  so his shows are few and far between. I enjoyed seeing even just one piece of his work and having a little time to talk to him about his work.

Another cousin, Susan, and her daughter Sally have a studio where they create the most wonderful chicken footstools you could ever imagine…have you ever imagined a chicken foot stool? Well, these are likely far better than what you just imagined. This started with a project Sally had to complete in one of her art classes in school. It was so cool and so well received they made a business out of it. Recently they have been making them out of their homes around KC but just prior to my visit they were getting settled into a studio at 43rd (I think) and State Line (on the Missouri side). We were fortunate to catch them at their studio and watch them in progress. The birds are unique and fabulous. They are made of a wooden egg in the center, cast bronze (I think) feet and beak and then felt from wool they have spun, dyed and felted by hand. Each one is unique and wonderful. You can find them on Instagram at thecitygirlfarm or you can google them. I bet there is a Facebook page (I’m just not a big facebooker these days). If you like whimsical unique furniture or fiber art, you would love to see these chickens!

We did the usual Wednesday "meeting" with aunts, cousins and friends at Starbucks on Wednesday and the usual bowling with Matthew on Saturday followed by BBQ at BB's Lawnside...yum! I got some extra time with Aunt Rose Evelyn at Andre's and Aunt Joann at the Black Dog Cafe. I got some time with my brother, Paul and my sweet niece Jennifer. 

So, KC was good! Matthew was a little disappointed that I did not have the energy to run around with him like I usually try to do. No extra trips to Target or to the movie; sorry Matt, maybe next time!

That’s all for Long Time No Blog, part 1. This weekend I’ll update y’all about my health and my work.

Love to you all

Janet