Monday, February 08, 2016

Be. Here. Now. (an update)

I just had a bath to help me relax. 

I plopped a bath cube in the water and immediately started to worry that it was the last one and that I needed to make time to get more.

"Be. Here. Now."

Then my phone alarm went off to remind me to take the supplements that I have been forgetting. I had to get Tim to come and switch it off, so that I didn't have to climb out of the hot water. He took the phone right out of the bathroom when he left.

"Be. Here. Now."

There is a lot of uncertainty in my life right now. I still haven't had the MRI that will tell me if the Cyber Knife radiation I had in December got rid of the tumours. Meanwhile, I am experiencing symptoms that are difficult, exhausting and disconcerting.

My head hurts on the right at the front of my forehead.

I have an earache, that sometimes extends to my jaw and throat.

The right side of my face tingles from my chin to my forehead, when I stand up.

There is something wrong with my balance.

I have begun to feel a pressure behind my right eye.

I don't have all the symptoms at once and they are not debilitating. They are exhausting. And scary.

I found out online that sometimes symptoms like this can appear, a few months after Cyber Knife treatment, so this could all just be part of the healing process. I cried when I read that. Maybe someone told me that when I was treated but I don't remember.

The brain MRI was ordered for February. A machine has broken at the hospital and they are behind. It was finally scheduled for March 12. This is after I see both my oncologists to get results. 

The MRI booking office has said that only the doctor can change the protocol. The doctor's offices say they have asked to speed things up. So far nothing has changed but on Friday, they told me that if I call tomorrow (Tuesday), they might have been able to do something. It's a step in the right direction.

"Be. Here. Now."

They're also running behind in the CT scan department. My last one showed a spot on my liver, which may well be nothing. I was originally booked in for that one on March 4 (long after I was supposed to have results) but I got on a cancellation list and got that done.

When I called to confirm my treatment time for last week (so I could go to the CT), I was told that no treatment was scheduled for me. Ever. I made a few calls, fixed that and was treated the next day. I still don't know how I fell through the cracks.

My therapist says that patients who self-advocate have the best outcomes. In that case, I should do well.

"Be. Here. Now."

When I was at Statford Festival, in Ontario last summer, I bought a mug, in support of the Actors' Fund of Canada, with those words emblazoned on it. I use it alot. I like to have them in front of me.

It's so easy to feel paralyzed right now. So little is within my control. I've been on steroids for two weeks to diminish the swelling. I am bloated, hungry, jittery, angry, clumsy and fearful. I'm having a stretch of insomnia almost every night. Some nights I don't sleep at all.

Should I be doing the things that help me relax? Distract me? Get done the things that need to be done while I am still sharp and strong enough to do them? Do I just live my life as though there is still a long stretch of it ahead?

How do I chase away the morbid thoughts, without burying them so deep that they chew away on my insides? How do I acknowledge the morbid thoughts without letting them take over my life?

There is a lot of uncertainty right now. There's no news, just a lot more questions. I have to balance pushing for answers and knowing when to relax and be patient.

I have never been good at being here, now. I'm working on it. I really am.

Update to the update: I now have a brain MRI scheduled for Thursday, February 11. I will get results on February 17. 


11 comments:

bibliogrrl said...

<3 I wish things were easier and you had answers. Been thinking about you a lot.

Elana said...

Thank you Laurie for sharing. I think of you often and wish you good health. Be.Here.Now.

Laurel said...

Be. Here. Now
Laurie---UGH! I'm so sorry you have to DEAL with all of this on top of well, ALL of this! I hate that things and people and situations slip through cracks especially when it has to do with important health issues.
Is it funny or ironic or something else that I was told the same thing-those that advocate for themselves get the best outcomes....I guess that's part of the reason I agreed to be interviewed for an editorial on just that-Patient Advocacy. And, what sucks is many, if not more than less, people have a hard time advocating for themselves...in every day life. Never mind in a health crisis. And that health crisis is not just you and your illness-that's tremendous and huge in itself. It's the healthcare system-it's often in crisis. Broken machines, not enough doctors. I'm still trying to get used to the "letters" I get in the mail summoning me for appointments, tests etc. I have no idea when they will be-I just wait for the mail. AND, when something isn't done right, like you have experienced, you have to call a bunch of places to get it sorter. Or what you originally think is your own nurse hotline but learn later that it's essentially a mailbox that you leave a message on and then you play phone tag for a few days. Mind you the people on the end are very nice, once you make contact.

I don't wish this on you Laurie. My situation is not anywhere near the level of yours yet we are still experiencing the pros and cons of the system (with our health at stake) whether we like it or not.

It's my week to visit all my favourite doctors and places as the hospital that still take my breath away every single time I go.

I send hugs and wishes and thank you for always sharing.

Laurel

Gail Speers said...

I like "Be Here Now". I distract myself from bad thoughts by working on projects in my many areas of interest or learning new things. Craftsy.com is a great website offering many online classes that you access when you want. Wait for a sale, most can be purchased for $20 or less on sale. You get about 7 hours of classes for that, split into subtopics. Just a thought...

laurie said...

Thanks to each of you. It means a lot to see you here.

Laurel, everything you say resonates with me!

Gail, I have a whole bunch of Craftsy classes I haven't watched. Thanks for the reminder. :)

zoom said...

Laurie, I love you and I"m hoping hard that those symptoms are a sign of healing.

I've never tried this myself, but I've heard that scheduling time for worry helps some people. Block off an hour a day just to sit down and worry. Apparently it makes it easier not to worry the other 23 hours a day.

Also - sleep is so critical to mental well-being. After resisting for years, I finally started taking meds for sleep. It has made a huge positive difference to my health and outlook, which makes up for any possible drawbacks to taking them.

Hang in there, and lean on your many, many friends.

Anonymous said...

You know what? You are awesome. Always have been. Always will be. Hold onto that when you are fighting to be. here. now. xoxox's j de aguayo

Ila said...

Hugs, Laurie! 'Be here now' is such a good mantra. I need follow it, too! Hoping for the best always. Xo, ila

Sue Ahrenhold said...

Know how special you are

Hope things are good, and that the scanners get their acts together.

My grandmother always said, prepare for the worst, enjoy the best. So, if the paperwork is done, just relax and enjoy NOW

Lene Andersen said...

Oh, how I hope it's symptoms of healing.

I really like the idea of scheduling time for worry. Not sure the steroids wouldn't send that into the stratosphere, though.

Love you.

Nancy's Point said...

Hi Laurie,
Talk about stress. I'm sorry you have to live with all this uncertainty. It must be so hard. And finding that balance must feel impossible at times. Be. Here. Now. That's a good mantra for any of us. As is so often the case, it's easier said than done. I am thinking about you. Hugs.