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!