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