pieces of a puzzle

You know how when you have a puzzle, you want to see every piece and know where it goes and get the pieces in place. Well, that is how I feel about my cancer and treatment right now. It’s a puzzle and I can only take care of one piece at a time and can’t really predict which piece will come next. It’s not a perfect analogy…but it’s working for me for now.

So, yesterday was a big piece of the puzzle and from my point of view it could not have gone better.

Before the procedure Dr. Andrews came in and gave us a lot of details about what was going to happen. He talked about all the people involved in the procedure. There is the radiation physicist, the radiation “handler” (all government issued and such), the radiation oncologist and then him, the interventional radiologist, or the plumber as he likes to refer to himself. So all of them were there for the party. He explained again that this radiation has a very short path, up the artery, into the liver and into the tumors, period; no risk for those around me. He said there is one kind of radiation that is so strong the person literally has to be alone in a room for 48 hours…yikes! 

It was quicker than the mapping procedure, as they had already done the work of placing the coils and mapping the course for the radiation. So the procedure itself was pretty quick. 

I had less meds, for sure, as I was on the table asking if they had given me the versed and they said, oh yes, it’s wearing off, we’re almost done. I was not asking because I had any pain…I had no pain, but I was just so aware. I wanted to ask for more drugs but resisted the urge.

The rest of the day was pretty mundane, laying flat for 6 hours is a lot easier with a little more versed in the system if you know what I mean! I did take a good nap, Mike left to get lunch and came back without me even knowing, so I know I was really asleep. I texted and netflixed and had lots of time to think about the puzzle.

Half way through the afternoon recovery, Paul Wade came into visit. He is the Physicians Assistant that we first talked to about this procedure a while back. He is very knowledgable and easy to talk to. I got a lot of information from him. So, here it is:

I will not follow up or see the radiation folks again, unless I have trouble with my recovery or if after my next scan Dr. Kaplan wants me to return for more radiation.

The tumors on the left side of my liver are small. There is a chance (not a promise) that they may shrink due to the radiation treatment to the right side. It is something that sometimes happens with radiation treatment. They are not sure why, but sometimes even remote tumors shrink due to radiation treatment anywhere in the body.

If the tumors are small enough he thinks I will not have anymore radiation anytime soon. This radiation is a big bullet that they can only use a couple of times and they may want to save it for another time.

There is a chance Dr. Kaplan may want to do chemo instead.

There is a chance Dr. Kaplan may want to watch and wait (though he has never been that kind of doctor before).

I will see Dr. Kaplan on Monday and we’ll talk about the timing for next scan, this is my first big question and the next puzzle piece. Will he want the scan in 2 months or sooner to check out the tumors on the left side? Will he want to wait 3 months to see the results of the radiation on the right side? You can’t really tell sooner than 3 months because of the damage caused by the radiation (so I’ve been told).  And until the next scan, I don’t imagine there will be any decision on my next treatment. 

In terms of recovery from the radiation he said that the radiation will kill the cancer cells and those dead cells cause an inflammatory response as my system goes in to sweep them up and carry them away. He says I may get a fever day 2 (that would be today…no fever so far) and flu like symptoms. I’ve had some very mild nausea. He said fatigue will be the biggest side effect and that did set in shortly after we got home last night and I’m starting to feel it creep upon me as I write.

I asked about what to do proactively for my liver…to help it heal. The first thing he said was “coffee.” 

Awesome, I like coffee! He said actually coffee is part of the food group called bitter foods and all those are good, cleansing and healing for the liver. We looked it up and I will try making friends with bitter melon, Jerusalem artichokes and dandelion greens! I already love coffee, arugula and kale! So, sit by wine, I’ll be back, I’m making new friends with the bitters! 

So that is the long story, the short story is I’m doing great. I have full confidence with Jamie and Mary holding down the fort at school. I know the kids are taken care of and will be fine (and I’m quite sure will flourish under Jamie’s good positive energy). I have meals on the way from my teacher friends and some parents from my class. Kids are coming over Sunday. So, really, I’m doing great..just checked the time…yep, it’s nap-o-clock!

Thank you all

sending you love and good health

Janet

Next Step

I’m scheduled for Y90 radiation on Wed. February 24 and I’ll take 3 weeks off from school. Then I’m likely to have another procedure at some point after that. David and I are working on finding a substitute as Hillary is not available for the full 3 weeks.

I was not convinced this was the way to go. The radiation doctors talked to Mike and me in a way that made us think there was quite a bit of cancer that the Y90 would not reach. I had a series of email exchanges with Dr. Kaplan and finally he got a hold of the radiation folks. He called me Friday night and said he is convinced this is the best bet. He thinks 2 treatments might get it all. He thinks it’s the best shot…so on we go.

Back In Class

One of the things we do in first grade, daily, is have some quiet mindfulness exercises. My class of 25 first graders are particularly “happy.” Sometimes a little “too happy” for learning, if you catch my drift. If you had to identify them as characters from Winnie the Pooh, which I do, I have a lot of Tiggers! So, our mindfulness activities when they come back to me after lunch and recess and other parts of our school day are very helpful and valuable. I have used a variety of exercises and resources, including the book Planting Seeds by Thich Nhat Hanh. We have practiced the pebble meditations and use them frequently. I’ve never used them word for word, I have to paraphrase, but they are a part of our culture by now.

After my 3 days off following my mapping procedure I was telling the kids what happened, how it went and what was coming up next. They had plenty of questions, of course, did it hurt (no, not at all) and one of my favorites was Zachary asking me what color the radiation would be. I told him I’d let him know. But it was Lola who stopped me and made me bite my tongue so I would not cry. She asked me if I used our breathing exercises to help me stay calm during the procedure. Absolutely! I use them all the time and we all talked a bit about how we breathe and use our self talk to calm our worried minds. Everything you need to know you learn in first grade.

Here is my latest love note, from Zachary mentioned above. Fine motor is tricky for Zachary but boy his heart in the right place! 

Breathe in, I am a mountain, Breathe out, I am strong...

with love 

Janet

Good news and Bad news

The good news is that I am eligible to receive the Y90 radiation. They confirmed that these tumors are being fed by the blood so the Y90 will be effective. Also, not too much will leak out into my lungs or stomach. They put in the shunts right then and there. I had a nice drug induced conversation with the guys working on me as they went. I had those lovely drugs that keep you in that sweet space of almost awake almost asleep.

The bad news is there is more than they thought. One treatment is not likely to be enough…we’d be lucky they said (we’ve been lucky before). The treatment causes a good deal of liver damage and they don’t like to do it more than once. They may do a second treatment, but that would be at 1/2 the dose. That is the most they can do. After the first treatment, we’ll just have to reevaluate, consider all the options and go from there.

Nothing is scheduled yet, but it most likely will be scheduled for about 2-3 weeks from now. The radiation doc…Dr. Morris suggested I take 3 weeks off after the procedure. That seems like a lot, but you gotta do what you gotta do.

One step at a time.

Thank you for all your prayers, good wishes, intentions, thoughts and support. It helped us get through this day.

With Love

Janet

Anxiety is a force

I have had so much anxiety lately. 

I was always a worrier, oh my, if you knew me when my kids were small, you know I could worry. I could make up any number of possible horrible scenarios for any given day and situation and worry to a ridiculous degree. Surprisingly, once they went to college and I really had no control (as if I ever did), I worried much less. Of course, that does not include the times Maggie was out of the country; I was right back to worrying like I had a 2 year old!

But, I digress. I was a worrier but I really didn’t know about anxiety. Anxiety is very different. Anxiety, I’ve come to realize these past couple of weeks, comes on like water:

a wave

a wash

a swell

in drips

I’ve experienced all of these recently, as witnessed by many people around me. Most of the day I can hold it back, like a dam. I’ll cry just a bit, a little leak,  but I can’t hold it back for long. Water is a force, so is anxiety.

Tomorrow we go for the mapping procedure and find out if I’m eligible for the Y90 radiation. I think a lot of anxiety will be relieved once we know…either way, just not knowing is so very challenging.

If I can, I’ll post at least a bit tomorrow evening and let you all know how it went. Until then…

love to you all

Janet

My new favorite socks...thank you Cara!

One step at a time…

It is easy to get ahead of myself and try to start planning my life around the possible scenarios and outcomes of the possible treatments ahead. It is more difficult to take it one step at a time. There are just too many unknowns. Period…I believe that is a universal truth; there are many unknowns. Cancer has just highlighted that truth for me.

And control…now that is a funny notion! Just the simple fact that I wanted to have my mapping procedure on a Thursday or a Friday so I could reduce the number of days I need to have a sub. When they called to schedule an appointment, to get a Thursday or a Friday I would have had to wait a few weeks and that seems too long. So, my appointment is on Monday, February 8. The good thing is that Hillary is available, I’ll be out 3 days and Hillary, the only sub my class has had this year, will be in. I’m so fortunate to have a good regular sub…and so are the kids!

What I don’t know is, after the mapping procedure, when I will find out if I’m eligible for the radiation. My guess is that it could be right away, as the mapping is done during some kind of active scan. The 2 things I know that would make me ineligible is if the radiation “leeches” too much out of the liver and if there are tumors being fed by all 3 branches of the hepatic artery. I would imagine they can see that during the procedure so will be able to let me know that day.

If I am eligible, approximately 2 weeks later, sometime the week of February 22, I imagine, I will be having the radiation.

Until then, I’m completely consumed with my 25 six and seven year olds. I carry them with me everywhere I go. I remember when I first started my teacher training, when I was 18 and 19 years old, and I had all the trials and struggles of a young adult. I remember the hours I was with the kids, all my troubles would disappear. I remember thinking, this is like a drug, I come in here, my life completely disappears and I get lost in this world. Teaching can be all consuming, and that can be a good thing. Children demand you be in the moment with them. I stay very busy, forget I have cancer and so little control. That can be very therapeutic.

I continue getting a bounty of love from the school community, my own kids and beyond. Not a day goes by that someone does not give me extra love and attention in one form or another. Marley’s mom told me that she woke up one morning, woke her dad and insisted he help her write the most amazing intention for me. She brought it to me and asked if she could read it to the class. The next day, Lola brought me a beautiful abstract drawing that looked to me like a piece of art interpreting Marley’s intention. These kids are amazing… Here is Marley’s intention:

Isn't that lovely. I love my job, I love my kids.

Sending on to all of you some of this kid love and my own.

Janet

Greetings from first grade,

Yesterday I gave my kids the update about my health, explained the radiation treatment and drew a diagram. I started by telling them where there liver is located, under their ribs, and how the ribs are there to help protect their organs. Then, when I started talking about my liver, someone mentioned that some people eat liver. I made it clear that people don’t eat human liver, they might eat cow or chicken liver. There was talk about how yucky liver is to eat and we talked about how it is a filter, like a water filter, for the blood in our body and how important it is to stay healthy to help our liver. Then someone mentioned how yummy ribs are, and we all agreed, those of us who have eaten ribs…yes, liver is yucky and ribs are yummy. 

My very dear, Aliza, went home and gave her family a lesson along with an illustration and labels. I just have to share this.

There is my hepatic artery along with the 3 branches into the liver and the beads of radiation.

Aliza gets an A++++!

These guys crack me up!

Happy beautiful Sunday afternoon,

It is a gorgeous day here in Seattle!

We are very optimistic about our treatment plan for these little cancer spots. Here is the long story…

On a Thursday or Friday in the very near future (this week, next week or the following) I will go in for a procedure to “map” the blood flow in my liver to see if I am a candidate for Y90 radiation. All of the visible tumors are small and in the right side of my liver. This cancer is fed by blood. They will put a catheter into the artery in my groin and follow it into the hepatic artery in my liver. They will use some kind of dye rather than the radiation to follow the blood flow into my liver to see which branches of the artery are feeding the tumors and to make sure little to no radiation leeches out of my liver. After that procedure I’ll need to stay still and lie flat for 6 hours to make sure bleeding from the point of the catheter has stopped. I’ll need to miss a day of work at most, at that point. There are a couple of scenarios that would make me ineligible for this radiation (for example, if too much dye leeches out of the liver or if the tumors are being fed by every branch of the hepatic artery), but, most likely we’ll be able to proceed.

In that case, it will take 2 weeks for them to create and cook up my own special batch of radiation. When that is ready I will have the same procedure, this time with the radiation. Again, I’ll need to lie flat and still for 6 hours. The PA we talked to on Friday said that 25% of people have zero side effects. He said most likely I’ll have fatigue and some mild pain. My hope would be to have the procedure on a Friday and take the next week off. Hopefully that would be all I would need. Of course there is the other 25% that need more time; but we’ll cross that bridge at the end of the first week!

During the mapping procedure, if they find that the tumors are being fed by 2 branches of the artery, they would repeat this procedure one month later. With the location of my tumors, it looks like I’ll only need one procedure, but he could not say for sure. That will be determined in the mapping procedure.

At that point there is really nothing more to do for the next 3 months. They have found that they really need to wait 3 months after this procedure before they can get a clear scan. In a way, that seems to be a long time, but this seems to be slow growing cancer, so it should be just fine in my case.

Dr. Kaplan thinks this is the best treatment for me at this point and he does not want to do any chemotherapy in conjunction with it…well neither do I! So, if I do get the radiation, that means no chemo!! 

That suits me just fine!

The PA said he would start the paper work for approval from insurance and tomorrow morning I will call and make my appointment. I’ll let you know about my appointments when I find out for sure.

This past week at school has been so emotional. People are so very lovely. A number of my peers went right to David, our principal to ask about donating leave to me (which I will need). I received a most beautiful bouquet of flowers from the special ed department, arranged by my teacher friend Janelle, gorgeous! I have been hugged and hugged by parents, teachers and kids alike! We have such a great community at Pathfinder!

The kids are amazing! I’ve had groups of kids show up with cards made by themselves and their classmates, it’s just been so very sweet! 

But first graders…they take the cake! I let them know last Tuesday morning that my cancer was back, I was going to have to be out, I didn’t know when or for how long, but I would find them an excellent teacher. I debated about telling them so soon, knowing there were so many unknowns. But, they are perceptive and as soon as word started getting out, they would pick up on it. Also, at the time, I thought I was in for chemotherapy and would be out, perhaps for the rest of the year. So, I told them. We had this great conversation, they were sad and worried and very dear. We talked about people they know who have been sick or who died. I let the conversation go on for a while, so we could all process and then I knew when I could stop. If you have ever been a teacher of young children, you know this is a fact…every single conversation, if you let it go long enough, has the potential to end up in the same place…and when our conversation got to this point, I knew I could wrap it up. This topic is dead pets. And not just their pets, pets of their neighbors, pets that are part of their families history; the cat their grandma had when she was a little girl, the dog their daddy grew up with. They are so terribly sad this pet is gone and even more sad that they never knew it. So as soon as we started talking about dead cats, I knew I could stop the conversation for that day!

The next day…in comes Quinn, such a card, he stops in his tracks, looks at me, and says, Hey, I thought you’d be gone with cancer!  And next over Aiden J…remember that bad news? My bad news, I ask. Yea he says. Yea, I remember. It almost made me sad. Then…It almost made me cry.

They are too cute and funny and I’m lucky to spend my days with them and so hopeful that I won’t need tons of time off!

I will keep you posted. Thank you for the prayers, hugs, and good wishes. We are feeling great about this treatment plan and feeling healthy and positive.

Love to you all

Janet