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…

Greetings on this hot summer evening!

I have only good news to report!

Yesterday we saw the cardiologist, Dr. Buckler. He was quite pleased with my progress and my numbers and was very encouraging about my future recovery. He explained that for my heart to recover it needs help from the meds and he alluded to the possibility that I won’t have to be on them forever (though I’m not counting on that…no hopes up too high!). For exercise, no aerobics…oh now that makes me sad…ha!! I can walk, do yoga or pilates but that’s about it for now. That suits me just fine! I’m to keep my sodium to less than 2000 g and not to drink more than 2 liters of fluids a day (that is the trickiest part right now!). He listened to my lungs and heart and heard no more leaking…everything sounds good. He wants to see me in 2 or 3 weeks. So! There you are…I’m recovering nicely I would say! 

Today I saw Dr. Kaplan, he also listened to my ticker and was quite pleased at how it was missing the leaking and the gallop. It sounds normal! He wants to see me 2 weeks after radiation, we had a little hug fest and then he sent us on our way!

Monday we see Dr. Osnis about how we proceed with radiation. I’ll let you know how it goes! 

Love to you all!

Stay cool!

Janet

If we were playing Chutes and Ladders, I just got another roll and landed at the base of a ladder! Up we go…again!

We saw Dr. Sandra Vermeulen at Swedish Cherry Hill. She literally walked into the room saying, “We can take care of this!” and then proceeded to make our day!

I’ll get a call from Dr. Robert Osnis who will be the person to put the three little pieces of gold into my liver to mark the triangle for the radiation or he may say the tumor is far enough from the ribs and small enough to do RFA, which will more or less cauterize the tumor and get rid of it right then and there…done, handled!

If he can’t do the RFA, he’ll put the gold pieces in to prepare me to go under the “cyberknife” which is very precise and accurate. I’ll then get a CT scan to make sure everything is in place and then go through maybe five 40 minutes sessions in one week with the cyberknife. That should take care of it!  She says I’ll have no immediate side effects but after a couple of weeks I’ll most likely have about 6 weeks of fatigue. No skin burn or burn of nearby organs, etc. 

It almost sounds too good to be true! She’ll put it in to my insurance today to get the ball rolling!

Thursday I see the cardiologist…I’ll let you know how that goes.

Wow, what a rollercoaster!

Love to you all!

Janet