Recovering

That is what I am doing…recovering.

Friday I went into school to do just a few things, going to take it easy. I stood in David’s office and felt lightheaded and needed to sit down. I recovered, went down to my classroom and felt the same way off and on. I did not feel great, did not feel like myself. I felt faint of heart. I felt super spacey and unable to focus. I could really only be good for the most mundane tasks.

I finally called Mike and then my heart doctor, Dr. Mignone. They made an appointment for 2:30 that afternoon. This is not how I want to spend my life, coming and going constantly from the doc. Thursday the oncologist, Friday, the cardiologist…whose life is this??? And I feel terrible dragging Mike through it all, I’m such a wimp about driving and really did not trust myself to drive myself up to Cherry HIll.

As it turns out, it was a good thing, of course. I was “dried out”, a little dehydrated. They had me walk 6 minutes back and forth in the hall, which I could do. I got a little extra light headed 2 minutes in, but maintained from that point. Dr. Mignone pulled in a portable ultrasound machine and we got to watch my heart. He said it actually looked stronger already (woo! hoo!) but saw the spot that showed a bit of dehydration. I got to see my liver (that thing is bloody hell huge!) and apologized profusely to it for all I had done to it, all the cancer had done to it and it’s most recent abuse by ablation. It forgave me and we came to an agreement to work together from now on.file:///Users/janetosborn/Downloads/IMG_4172.JPG Dr. Mignone asked, “Do you have a favorite salty treat?” Oh, my….how does one decide? But, “Yes!” is the only answer to that question. Then he took my note book that we have been keeping since late June of last year and added notes to one page. He wrote out the upsides and downsides of each of my heart prescriptions. Two of my prescriptions will now depend on what my weight and blood pressure show each day. I feel like I understand the meds better and what I want from them, and how to regulate them myself. He is an excellent teacher and a fabulous doctor. I think I won the doctor lottery somewhere along the way.

We left and headed to Zippy’s…I was ravenous…for our salty treat! Yum…burger and fries. There was a chance I overdid my salt date, but the scale in the morning showed just what he had wanted it to show…so all is well and it was extremely satisfying.

We got ready as fast as we could and headed out into the sea of Friday night traffic and went to Keffrey and Janelle’s wedding in Tacoma. What a lovely evening and the escape from “sick land” that I needed. And Jennifer Annable took this  picture of us that many of you have already seen on FB…..but just in case. You can see my hair is growing! No chemo since June 9!

We wanted a quiet weekend but ended up quite busy. We bought a gently used 2015 red Toyota Prius Saturday morning. No matter how much you already know what you want and you think you’ll be in and out of there in no time, I think that took 4 hours. But that deed is done. I have a car that will stay dry and get me up to cardio rehab 3 days a week and take me really anywhere I want to go.

Saturday night we got to babysit our little June bug from next door. She will be 2 in October and she is as sweet, cute and smart as they come. She completely entertained us for the evening! Thanks Lizzie and Vince for sharing her with us.

Sunday night the kids, Maggie, Michael and Eva came over and we had pizza with Lizzie, Vince and June, and Lizzie’s grandma; Liz. This was our goodbye for a while pizza dinner with them. They are headed down to Austin for 2-4 months so Vince can help finish up the Austin Bouldering Company’s gym. I’m so happy for Lizzie and June that they get to go, too! We’ll miss you so Lizzie, Vince and June!!!

Jenni Haynes found a sub for me! Hillary, whose husband has worked with Mike in Renton these past few years, is a friend of Jenni, has little kids at home and is just heading back in the classroom and only wants to sub part time and I’ve already met her at one of our pizza parties and she’s great…what more could I ask for! Thank you Jenni for thinking of Hillary and thank you Hillary for taking this on! I am so grateful!

Today is Monday. I’m going to head into school today and get a few more things done. Hopefully today I can do more than just put stuff away! Tomorrow is our official first day with staff and kids don’t come until next Wednesday. I have one week to build up my muster!

Thank you all for your love, support, best wishes and more through this most recent bump in the road. I am optimistic and feeling good.

Have a great week!

With love,

Janet

And since I never got to finish adding my pics from Ireland I'll just add a few from the end of our trip now and then... A few from Dublin...

This post is most definitely overdue, but everyday things change and I can hardly keep up with my self.

We really thought I’d get to go home on Saturday but when I woke in the hospital in the morning the registered nurse practitioner for Dr. Mignone gave me the news that during the night I had a run of ventricular tachycardia. Who knew? This is not a good thing. It raises many eyebrows of the poor folks who stay up all night and watch all our heart monitors…this was a highlight of their night! But for me it meant more monitoring and since it was Saturday it was 3 days of watch and wait. What it could mean in the future is an implanted defibrillator.

During those three days they messed with my meds quite a bit. I was weighed and blood pressured and had blood drawn repeatedly. I got potassium and magnesium to balance out my electrolytes. But mostly I sat around and visited with family and friends, watched Mad Men and read my good book (a memoir of a woman with 2 little kids who gets diagnosed with breast cancer….you can always find a sadder story to make you feel better).

To make matters more complex, my sister and 2 of her daughters, Amy and Lucy have implanted defibrillators. They have had them for years. Years ago a heart specialist spied Amy’s 12 lead heart read out and got very excited in a heart doctor kind of way. She was tested further and diagnosed with Brugada’s syndrome, very rare. Kathy and Lucy were also tested and diagnosed positive. I was tested and they said I was fine. Jamie and Jennifer, Kathy’s other two kids were also cleared. But the saddest fact is that they had already lost their brother Andy, years before that to a sudden death. Andy had many contributing factors, issues, challenges and we’ll never know what really happened. Recently, they have pulled back on the Brugada label and they are not sure what is going on. The doctors say they have "something"…but what? They are not sure. Both Kathy and Amy have been shocked and their lives saved by the device. And Andy makes the case pretty strong that there is something going on. But what about me? I don’t think mine has anything to do with it. The doctors in Colorado, where they live, are actively pursuing a definitive diagnosis. All of that information will help my doctors figure out what is going on with me.

OK, back at the hospital I finally had a cardio MRI at 8:00 Monday night. Wow! That was quite a medical test! But the good news is it showed my heart has NO SCAR TISSUE!!!! That is the best news! That means it can heal a good deal. It also showed my ejection fraction had not changed at all or much from the measurement they told with the echocardiogram in July…a 35% ejection fraction which is low but not scary low. I can build it back up (ejection fraction has something to do with the level of power in your heart squeeze 65-70% is the highest…I think).

Tuesday morning Dr. Mignone came in with his group of residents and nurse practitioners and gave me the stamp of approval. He let me go! They will still talk about an implant or there is a cute vest I could wear for 3 months that would warn me, “you are about to be shocked” and if you hear that, you can turn it off, but if you are flat out of it, you’ll get shocked back to life. I don’t mean to make light of it, but honestly, I don’t think I need either device (but I didn’t think I had cancer either).

So by Tuesday afternoon, after getting monitored a bit longer, getting my marching papers and my prescriptions, getting my port unplugged, Betty fetched me after 6 nights in the hospital! Crazy! Michael says it was a blessing in disguise as it made me take it easy to recover from my liver ablation. I think he if right, there is no way I would have stayed down that long at home.

Today I saw Dr. Kaplan. He says at this point, all tests point to the strong possibility that right now I don’t have cancer. That doesn’t mean it won't come back, it doesn’t mean there might be some pieces of cancer shit hiding in my body…but I’ll take it! Right now I might not have cancer!

He also listened to my heart and lungs and said I was gonna heal again! My blood work showed that my red blood cells are higher than normal for me (watch out first graders!).

Speaking of first graders. I have to start the year slow. I'll be half time for at least 2-3 weeks and hopefully building up quickly from that point in time. I'm hoping to work every morning so the kids have some structure and predictability. The challenge will be to find someone else willing to sub part time for a few weeks or so. Any teacher friends in Seattle know anyone who wants to sub part time at an awesome school with amazing people...send them to me. Thanks to Maggie, Jenni, and Emma, Emily, and Angie for helping put the finishing touches on the classroom. I think I'll be able to walk in and get started!

So there you are… news from the rocky road to recovery.

We went shopping for a gently used red prius today…gonna get one this weekend. The ’87 Camry is a sweet ride, it just does not dry out all winter long. I have to clear the inside of the windows with a squeegee and the rear window just stays fogged. That’s how I’m celebrating for now. A little weak and sore still from the heart stuff and the surgery to go out and kick up my heels…but that is on the list!

There is no way to thank you all for the love and support I've felt from all of you over these past 14 months. I never counted on having even one day to say "I might be cancer free, today." You all have helped me get here.

always with love, strength, peace and light

Janet

Hospital update...
Still here and doing ok.
They are getting my fluids balanced and so far able to get me back on two of the three heart meds...which is a good thing. The meds will help my heart heal, give it the crutch it needs to get stronger. They'll wait a little longer to give me the third med. Today they gave me two units of blood, which I'm hoping will help me feel stronger and more energetic. I had to be closely monitored during that process so I did not over load with fluids, it is a true balancing act! Thank you to all who donate blood, it is a precious thing.

Both Dr. Mignone (head of the heart failure unit) and Dr.  Kaplan (you know who that is!) say they are fine with me going back to work on time as long as I feel up to it. They are all impressed with how quickly I'm recovering (again). I am living in the optimistic spot that I will continue to improve quickly and be back in class on September 9th. That gives me more than two weeks.

That will be a big day, a great day, and I think that is what I really need to make my heart heal❤️

Lots of love,
Janet

Well, how to begin...

The short story is the picnic is cancelled...

For some reason, probably inflammation from the procedure Monday, I'm experiencing heart failure....again. The procedure did go well, he thinks he got it all, but here we are with another bump in the road. 

Yesterday I was lightheaded and had low blood pressure. Dr. Osnis, who did the procedure on Monday, had me come in yesterday to rule out internal bleeding, which he did. Today when I got up my blood pressure continued to be low. I was feeling less light headed but my weight has been going up steadily which could mean I was retaining fluids since I haven't had much of an appetite or much to eat since the procedure. I was also in more pain today. I called my cardiologist and he sent me to the hospital. So, here I am, at Cherry Hill in the cardiac unit. The plan is to get the fluids out of me, which I might have been able to do at home if my blood pressure was not already so low. Then they'll work on the right combo of heart meds to keep the fluids in balance and regain my heart functioning. They are saying it is mild, I caught it early, so I plan on recovering quickly like I did last month. 

But it will take 2-4 days in the hospital, which means no picnic for us. 

I have a reservation, all paid for, so if anyone wants to plan a function for Friday afternoon/evening at Lincoln Park, let me know. You could pick up the reservation page and have a party! It's a great shelter! 

I really am optimistic that I will bounce back quickly from this. It's another bump to go over and loop to go through, but I am determined to get to the other side. 

Love to you all from Cherry Hill,

Janet

Post Op

Hi everyone!

It's Maggie again (but don't worry!) The procedure took a bit longer than anticipated yesterday because things were backed up, but everything went smoothly. They went in twice, with two needles, and the doctor thinks he got it! We won't know for sure until they do another scan in 3-6 months, but we're feeling positive.

 They got back from the hospital around 9:00 last night and she taking it easy on the couch today.  Home safe and taking the time to recover.

Thanks for your continued support and we hope to see you all Friday!

Best,
Maggie

Good Morning

We received approval from the insurance company and my ablation is scheduled for August 17th. The timing is pretty good…if I give my self two weeks for recovery from the pain that puts me right at the week of August 31. Pathfinder staff is officially due back to work that week so, I should be ready to go. Of course as  my teacher friends know it takes a little more time to get a classroom ready, especially for the little kids because we have so many books and other materials. And I especially have a huge amount just due to the number of years I’ve been in the game.

This week I’ve started back. I’ve spent 3-4 hours each day cleaning out much of my old teacher stuff and reorganizing the stuff I can’t part with. I’ve only made a small dent in all the stuff inside that classroom, but it feels great to be back and it feels great to start purging. Next week I need to get more serious about putting things in place for first grade. If I’m able to get the physical space ready, I’ll be less stressed and able to focus on my recovery. When I get back to work the week of the 31st there will be plenty of time for me to start planning the details of the day. 

When I was in the hospital recently I was despondent, feeling like I would not make it back to school after all. I could not imagine regaining my strength and energy in that short amount of time. But less than a week later I was in Dr. Kaplan’s office telling him I thought I could manage full time. My heart feels strong and I feel like I am on the healing path. I feel ready to take on my full time job. I just pray this upcoming surgery does not derail me for more than those 2 weeks. But, like I say these days, there are no guarantees for anyone, not for me and not for anyone.

With that in mind…go enjoy this weekend! It is here for you!

with love

janet

FRIDAY AUGUST 21    4:00

THANK YOU FOR YOUR SUPPORT

We have the big shelter on the water at Lincoln Park (shelter #3) reserved for us to have a “Thank you to all our supporters party!” If you read this blog…you are invited! If you know one of those lovely people who have supported us this past year and don’t read the blog, please let them know they are invited, too.

Since my procedure is August 17th I’m only guessing I’ll make it to this event. We are keeping it simple, because really, when you are on the beach at Lincoln Park, you don’t really need much!

Here is what we’ll bring to share….

a cooler with kid friendly drinks (no alcohol in city parks)

plain water and some cut lemons and limes to make it fancy for you!

cups and napkins

dessert…cookies, brownies, cupcakes

we’ll also have briquets and start up one of the BBQ grills near the shelter

If you’d like to bring a picnic for dinner, bring it, you could include in that something to BBQ if you’d like.

Or you can just come by for some dessert…

Or you can just come by to visit and watch the sunset…

This continues to be quite a journey for our family. Reserving the shelter at Lincoln Park and a little time on a Friday afternoon is just a very small way to say thank you for helping us get through this year.

Hope to see you there!

Here’s the Scoop

Today we went to see Dr. Osnis about getting rid of the last of my cancer, my last tumor, using “cyber knife” radiation or microwave ablation. He explained both procedures and we discussed the pros and cons. I’ll try to summarize…

The cyber knife would start with an appointment to set the fiducials, 3-5  little gold pieces, into my liver to mark the location of the tumor so the cyber knife could do its job.  I would then need to wait a week to let them “settle” and let the inflammation calm down. At that point I would get a CT scan to make sure everything was set and then I would have about 5 days of cyber knife radiation at about 40 minutes each. The cyber knife controls  the radiation better than regular radiation (at least that is my understanding) so there are no skin burns, etc. I could drive myself to the appointment and drive myself home, there are no negative effects that day. I would feel fine for a couple weeks and then a pretty heavy fatigue sets in for about 4-6 weeks. So the upside to cyber knife is that it is fairly painless, the downside is that it takes at least 7 appointments, over at least 2-3 weeks, just to do the procedures and then there is the fatigue.

During the microwave ablation they would take a fat needle, insert it into the tumor and burn it with microwaves. This is a one shot deal, that is the big upside to this procedure. It will not drag on for weeks (given no complications, of course, anything can happen anytime, with either procedure, I am aware). The down side has to do with the location of my tumor. If it was in the middle of my liver I could just be sedated and they could go right in, but my tumor is very near the liver wall. Because of this location they will first try to expand the space between the tumor and the wall by injecting saline solution. This may or may not be effective (sometimes the saline just keeps rolling, as water does, to the lowest point), but either way, because of the location there will be more pain. He said it could be up to two weeks of me needing pain killers (there are worse things, right?).  

Both procedures have about the same positive outcome of 85-90% effective. With either procedure if they don’t get it all (it is tricky with tumors in the liver, it is easy for cells to creep along and spread) they can try the other treatment…so if the ablation is not 100%, they could go back in and do the cyber knife procedure and vice versa. 

Dr. Osnis would not give us an answer to the question what would you do. He said they were both good choices. Mike and I left the office and on the count of 3 we both said, “ablation.” We were able to sneak in to Dr. Vermeulen for a few minutes to bounce our thoughts off of her and she totally supported that decision. She also said she had talked to Dr. Kaplan and he was fine with either decision.

So…ablation it will be. I think even if I wasn’t trying to meet my back to work schedule I would pick ablation. I can handle pain ok (knock on wood) and would prefer fewer appointments. I know there will be follow up appointments for either procedure. I’ll be going to extra doctor appointments for a very long time, I am aware of this. All the more reason to condense this part of the treatment.

They are currently seeking approval from the insurance company, then we’ll get the procedure scheduled and get on with it!

That’s the latest scoop! I’ll keep you up to date as I know more!

love and more love to you all…

janet

P.S. A reminder to keep August 21 as a possible save the date…but now, so much depends on scheduling the ablation…