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

Y-90: Formidable

1st Grade: Formidable

Me: Burnt Toast

Man...I don't want to be a whiner but the last 3 weeks have been quite challenging. 

I went back to work one week prior to report cards being due. I had anticipated and prepared for this prior to my leave for the radiation. I had collected about 1/2 the data I needed. But, for first grade, especially in reading and math, they have those big growth spurts and so I had to do a lot of assessing those first 4 days back. The kids had a great time, we had lots of math choice or writing choice, etc, as I pulled kids and assessed them individually or in small groups. It was intense and a great deal of paper shuffling and extra time. Then that first weekend I spent the better part of Saturday  and Sunday filling out the report cards online and planning curriculum for the next week and beyond. I didn't really get much of a break that weekend, and probably really needed one.

My second week back to work my pain really started to increase. I had no pain in the morning, it usually started at 3 or 4 or 5 in the afternoon. The pain messed with my sleep. I was also having trouble eating. I had little appetite (that is NOT like me) and food was just slow making it's way down. But then, somedays the pain would creep in during the middle of the day. So, now, I'm not getting a lot of sleep, can’t eat much and I'm having pain creeping in during the day. On Wednesday, I went in and checked in with Dr. Kaplan. He had my blood work done and could see no problems there. He poked around and listed to my heart and lungs. He said he really just thought it was still from the radiation. He said he could order an endoscopy, but thought it was not necessary. Well, if you don't think its necessary, I don't want it! He encouraged me to just up my pain meds and stick it out. Okay. As we left his office I said to Mike, "I'm not dying and I can keep working." Mike said he didn't think those should be in the same sentence. I said at least they were in the right order. We were relieved. We had a Dr. K blessing and hope.

But on Friday that week, I had a pretty heavy wave of pain mid-afternoon. I got everyone reading quietly (such a beautiful thing this time of first grade), thank goodness Mary was there and I could leave them in her more than capable hands and take a break until the pain reliever kicked in. 

And then, the pain just kept getting worse.  I finally found the formula to a good nights sleep, but it involves some pretty heavy duty pharmaceuticals, and I hate going there...but I HAVE to sleep. For this last week before break, I found a sub for Monday and Thursday afternoons  (the mornings are always ok, and the pain creeps in at random times in the afternoon) and scheduled a sub for Friday. On Tuesday afternoon, I had to leave work right after the kids as I was struggling. I came home, laid in the dark, listening to my guided meditation and doing all I could to calm my anxieties and lessen the pain. It was not a pretty sight. Mike came in just before 5 and insisted I call the doc again. Dr. K got on the phone and said he would order a scan, they would call me in the morning with the next available time. Wednesday morning they called and I had a scan scheduled at 4:10 that afternoon.

Mike came to school, picked me up about 3:30 and off we went. The last scan of the day. I knew Dr. Kaplan would call as soon as he  knew anything, I knew it would not be that night, so I just tried to put it out of my mind. I missed his call Thursday afternoon, but he left a voice mail. Before I listened I noticed it was just 9 seconds long. What can you say in 9 seconds. You can say, call me back or come see me tomorrow (that would be bad news, for sure). What he said was, "This is Dr. Kaplan, your scan looks "globilybear" all your lesions are getting smaller. Hope you're doing ok." Maggie thinks "globilybear" was globally better...I'm not sure at all what it was, but it doesn't matter...right...all your lesions are getting smaller. Wow! Unbelievable! So this is pain with a purpose and it was a huge relief. After that I emailed him with more details about my pain and he prescribed some even stronger stuff. I'm on that now and I think it might be helping.

I believe I have the red-head syndrome regarding pain. It is a real thing. My mom, a red-head, carries around an article and shows it to all of her doctors. Red heads feel pain more intently, more intensely. I always thought I could bear so much pain. I’ve sucked up a lot of pain in my days, 2 natural childbirths I’m proud to say! Also, I spend a lot of time around 5, 6, and 7 year olds, and you really can’t complain to them! They always got a loose tooth or some kind of owie to trump you! But, back to redheads…my mom, my sister and my brother, always had red hair. I’ve had reddish hair on occasion (on it’s own, my hair has changed colors many times!). So, I’m convinced that is part of my issue. Bottom line, Y-90 is still kicking my ass and IT IS SHRINKING THE LESIONS!!! 

On Monday I have tickets to go see my mom in KC. I was ready to cancel because of all this pain, but I’m going to go after all. I called mom and told her about my pain, that I may just want to lay on the couch, period. She is cool with that. She said she hates to see her kids in pain, so bring her some of the pain meds, too! What a hoot!

So, we are relieved, to say the least! I have one week to relax in KC and get through this pain. The cancer is shrinking. I’m not going to go back to work full time until the pain is GONE! I can work mornings and I’ve got word out to some awesome subs, so I know the kids will be fine. I have to finishing riding this wave and I can't do it while working full time, this I have learned!

Thank you all for your love and support.

My teacher friends have been so good to me, helping me, holding me up!

We are still here, still fighting this most formidable foe!

Happy Spring

Love,

Janet

READY OR NOT…HERE I COME!

I think I’m ready. I’m going to give it a go, anyway.

Saturday I felt really good and thought I’d turn THE corner. Yesterday I had a wonderful day meeting my college buddy, Mary Beth, at the Seattle Art Museum. She is in town visiting her son and we had a lovely lunch and trip through the museum. Maybe I overdid it because by the time I got home my pain was coming back. It kept me awake a good chunk of last night and has been up and down all day today. It’s not killa pain…so I’m just gonna suck it up and go with it! I keep in mind how much my liver hurt after the ablation in August and the fact that I recovered from that. I know this will heal soon. I’m banking on the magic of children to get me over the final hump. 

I have not heard back from Dr. Kaplan and I have not emailed him to ask if he talked with Dr. Andrews. There is just a part of me that knows it is what it is, it hasn’t changed since January, no matter what it is. So, I’m letting sleeping dogs lie, for now.

And on that note, since this is my last official day of health leave, I think I’ll go lie with my sleeping dog! Scoot over, Wilson, last chance for a Monday afternoon cuddle for awhile!

I hope this post finds you well and enjoying spring.

With love

Janet

We’re calling it good news

Today was scan day, always a day to practice our breathing and incorporate our anxiety reducing techniques. I’m telling you, it can be a stressful series of events.

Overall it went well.

First of all it was not a crowded day at Swedish, we had pretty swift service in all departments. I checked in and got my “yummy” banana drink to glug down. Then I had a blood draw and my port accessed for the dye they inject to do the scan. We had to wait a bit, for the banana drink to make it’s way down the track and then I headed back for the CT scan. I just had 4 or 5 runs through the machine and then out the door. 

Mike and I decided to celebrate Pie Day with lunch at Serious Pie. We shared a pizza with a delicious nettle pesto  and a really yummy creamy fresh mozzarella. Then, again, being pie day and all, we shared a piece of coconut cream pie. I’ll just say it was NOT Yucky and helped a great deal with the stress and anxiety of waiting for the scan results!

We had some time after lunch and we spent it in some comfy chairs in the Starbucks Experience, I nearly fell asleep as fatigue has been my most recent battle.

So back to the doc, it’s a little complicated. 

Let’s talk about the left lobe of the liver:

In January there was no cancer to be seen, they saw some cysts which are not cancerous. In February, when we had the mapping for the Y90 the radiation doctors saw cancer in the left lobe…that was when we freaked out. Now, the CT scan show no change since January, it shows cysts and no cancer. But the CT scan and the radiation camera are two different tools. So, while we were in the office Dr. Kaplan called Dr. Andrews and they have a plan to look at all the films and talk in the next day or so and figure out the discrepancies. Then he will call me.

But be they cysts or be they cancer cells the truth is they have not changed since January, so that is a good thing. We think that I’ll have a pass for 2 more months, we’ll look again and see what we see. So a pass for 2 more months means I get to go back to work and I’ll get to go to KC for spring break. So, like I said, we are calling it good news!

Now to the right side: Dr. Kaplan said those tumors actually look bigger but it is hard to imagine that it is anymore than an inflammatory reaction to the radiation, so he is not worried about that. We’re just going to give the right lobe of the liver more time to heal

And now back to healing from radiation:

Last Monday I blogged and I was starting to experience some pain. I ended up with a pretty miserable week full of pain. By mid week the pain had increased quite a bit. I was having trouble finding any meds to touch it. Most over the counter pain relievers I tried lasted only 2 hours, I got a prescription for hydrocodone and had the itchy reaction I had previously to oxycodone. I tried other 2 other prescriptions as well. I went 3 nights with very little sleep. It was a rough week. The pain has finally decreased and I found the right combination to take care of what’s left. Most importantly I’m back to sleep but now the fatigue has wrapped itself around me like a blanket. I am so dozy. I start out in the morning feeling good, but afternoons I just want to close my eyes and curl up.

Therefore, we decided today that I really cannot go back to work in 2 days. Oh, I could probably DO IT, but I'm still using pain pills and I'm seriously worried I might fall asleep on the job and get tied up like Gulliver by my little Lilliputians.  So, I’m taking just 4 more sick days to get past the pain and fatigue. That will get me a weekend and a Monday. I plan to go back Tuesday the 22nd. In the meantime, I’ll be resting and recovering and doing that with a little less stress knowing that I have the next 2 months!

On another note, I’m not sure if I’ve mentioned that Michael has been turning bowls with his dad and has the bug. Last night the kids were over for dinner and Maggie and Eva started the marketing campaign for Oliver Bowl Co. We have an Instagram account (oliverbowlco) check us out. I lobbied loud and long for “all of her bowls” instead of Oliver bowls…no one thought it as cute and funny as I did. I thought it was hilarious!

Ok, I am well past nap o’clock and going to hold out for a really early bed time.

I’ll let you know when Dr. Kaplan gets back to me if any of this news changes, but for now. Happy Pie Day!

Love to you all

Janet

Healing in Limbo

That continues to be the name of the game around here. Just trying to get this liver to chill out. Turns out livers are not all that fond of being radiated. That makes sense.

The side effects have come and gone and come and gone, it’s a bit of a ride. The nausea is down but the pain is up. It kept me up last night and is a bit on an ongoing undercurrent. I’m resistant to pain medication, you might be surprised to hear, what with my fondness for the hospital drugs. But, I like to give my body a chance to do what it is supposed to do and sometimes I think some drugs interfere with that. I’m supposed to have an immune response which is inflammatory; why would I take an anti-inflammatory to stop that response? My body is busy carrying away dead cancer cells and that hurts!

I saw Dr. Standish today. Thank goodness. That is always a good day. But what god-awful weather it was to drive to Northgate this morning! Mercy! You’d think a 10:00 appointment would give you a fighting chance to miss traffic…HA! Anyway, I digress… Dr. Standish is always so healing and supportive. We talked about the whole story, all the moving parts. She, like me, thinks the pain in the liver is a good sign. A swollen liver causes pain, that is just a fact. My body is fighting and why wouldn’t that hurt! She taught me how to do a castor oil compress to help with the pain. I came home and treated myself to one while watching the last episode of Downton Abbey (no spoilers…just go watch it, now!). It did calm the pain. I’ll repeat at bedtime and if I don’t sleep or the pain remains tomorrow I’ll be going for the pharmaceuticals. I can only give my body so much time and space to heal!

A week from today is my scan. Dr. Standish and I talked about some of the possible options should Dr. Kaplan determine I need to continue treatment. She is going to do some research into immunotherapy treatments that might be a good match for me. She will be emailing Dr. Kaplan and she says I’m not to have any chemo therapy until we’ve thoroughly exhausted looking for newer less awful options. I’m all for that! She knows that I plan to return to work next week. We scheduled a phone appointment the Friday after the scan.

Until then…it is healing time in limbo; not an easy place to heal. The physical pain is one thing but the waiting is the hardest part. I’ve got good strategies and good support for both.

On another note; the kids were over yesterday. They are doing great! I stopped in and visited them at their school on my way home today. What a treat to walk into a classroom and see my two grown children working with their students. I caught the classroom at a perfect time; it was running like a well oiled machine. Michael was working one on one with his little guy, Maggie had a group of three little guys she was helping with at computers, there was a group of 4 kindergarteners in the front with their teacher and a group of 3 first graders in the back with theirs. There were at least 3 other little kiddos with one on one aides. It was a perfect picture! The noise level was just right, everyone was engaged! What a fine example of inclusive education; typical kids and kids with autism-all kinds and levels of autism-in a K/1 classroom. I was not feeling great, but I’m so glad I stopped and got a peek into their world. What a proud mama I am!

Thank you all for all the love and support you’ve shown in so many different ways. We really are blessed.

With love and hope and healing

From Limbo

(with all those poor pagan babies)

Janet

Healing

Thank you all for the texts emails food and love. Every bit is a show of love and support that we tuck in our hearts. We are part of a big and generous community. Thank you!

Yesterday we met with Dr. Mignone about my heart and Dr. Kaplan about the cancer.

My heart is recovering nicely. He is very pleased with my ejection fraction, or what he likes to call my heart squeeze. The main number that he would like to see change is my resting heart rate; it is too high. Prior to heart failure I had a lovely resting heart rate, in the 60’s or 70’s and great blood pressure numbers, too. Now my resting heart rate is in the 80s and 90s and that means my heart is working too much. Too many heart beats. Really the only way to try to whittle that number down is through cardio work…damn it. I hate to sweat! Oh well. I’ve been working out, quite a bit, but not really hard enough. I’m more of a meanderer than a runner! I have to focus on working hard while I’m on the rower and on the treadmill. I like to think of my workouts as “at least it is some work…better than zero.” But, now I have to push myself…grrrrr…I hate pushing myself! I’m going to use my radiation recovery time as an excuse to put it off a few more days at least…but then I really need to do the work. I will. I promise. I have to. Or I wouldn’t!

The good news from Dr. Mignone is that I really don’t need to be so strict and hard core on sodium and fluid limitations. My body is figuring that out, I’ve not needed the extra diuretics so he said to give it a try and loosen up on those limits…ok! No problem! I immediately wanted to go get french fries but was so tired after all the appointments and feeling nauseas from the radiation, so took a raincheck! But they are in my near future!

Dr. Kaplan is pleased with how I’ve responded to treatment at least as far as the symptoms I report and how I look. He can only see what he sees and poked around on my liver a bit (well, yes, that does hurt!).

But the big question: What is next? He said to schedule a scan the third or fourth week of March. It will be too soon to tell the effects of the radiation on the right lobe but we will be able to see what is happening in the left lobe of the liver and make decisions about that. So we came home and looked at the calendar. I realized that Monday and Tuesday of  the 3rd week of March are the last 2 days of my sick leave to recover from radiation. I could get a scan on Monday, have Tuesday to process (get my shit together) and go back to work as planned on Wednesday with more knowledge about my future (and therefore less anxiety). So that is what I’m trying to figure out. I have a call into Dr. Kaplan’s, they have to get the insurance approval and get me on the schedule. If it works out, I’ll have the scan Monday March 14, and meet with Dr. Kaplan that same day then back to work on Wednesday with information about my near future.

I should hear tomorrow morning if that can be scheduled. I hope it works otherwise I’ll have to go back to school and know that I’ll get a scan in a few days or a week and in the meantime not really know what is ahead…that makes me anxious just thinking about it. It is the NOT knowing that causes the most anxiety. I’m working on the anxiety at many levels, with many tools, but there it is, right under the surface most of the time. Less anxiety is a good thing! This I know for sure!

Now, it is recovery time. There are points of time in the day when I feel just fine. I’m like, what am I doing and what am I going to do for 2 weeks? Then I get hit with these deep aches in my bones or fatigue and nausea and I’m like…oh, yeah, I had radiation, I’m gonna take a nap! Dr. Kaplan agreed with the three week time line. It’s good to have time to heal. That is my word these days, my mantra…healing, healing, healing…

As I post this we are having a huge wind storm. I’m watching the trees nearly tip on their sides. March is coming in like a lion!

Love to you all

and healing

Janet