Tuesday, May 24, 2016

may you live in interesting times

It's been two weeks since my surgery and for some reason, I thought this would be the easy part. I don't really know why I thought that, except that both my surgeon a and my medical oncologist seemed to the think that putting the Ommaya in could have been like day surgery and I would be feeling like myself again in a week or so.

Not so much.

The nurses were much more cautious and they said to take it easy, be consistent in my activity and increase it very slowly. Ultimately, this is what makes sense. I just wish I weren't so damned impatient.

My surgery was on May 9th. I was in the recovery room for much longer than planned because there was no bed for me in the neurology ward. I ended up being moved in the middle of the night and sent home by noon the next day. And I was just kept in as long as that, so that I could get my three doses of IV antibiotics.

I had a good first couple of days at home (and it was such a relief to be there) but later in the week, after a fast taper on the Decadron (the steroid with which I have a hate-hate-like relationship), I started to notice that my eyes were getting swollen, as though the lids were filling with water. By Saturday afternoon, they were swollen to slits.


They got worse.
No one told me this could happen.

The next day, Sunday, my eyes were starting to improve but my head was hurting. In the beginning, all the pain had been around my incision. By the following weekend, the top and back of my head hurt and it felt just like my brain was swelling. Or a new tumour was cutting off the flow of liquid. It hurt and was very, very scary.

I debated going to Emergency (I hate the ER but the stuff I was reading online pretty much said it could either be a nuisance or kill me) but in the end, decided to take it very easy and call my surgeon the next morning (Monday).

My doctor's secretary made me an appointment and had me come in. My surgeon ended being called away to an emergency and we spent 5 hours at the hospital. It was worth the wait. A CT scan showed that there was no bleed and no obvious new tumour. My doctor put me back on the steroids (a drag but good for the swelling), shared a pretty decent MRI with me and a very hopeful story of a patient with leptomeningeal disease who he knows and has treated, who is still alive and active, two years after her diagnosis.

I told him that I'm collecting hopeful stories.

I went home in a much better mood but woke up in the night with a killer urinary tract infection, my second in a month and almost definitely contracted at the hospital. I have finished my course of antibiotics to treat that and am trying to consume as much probiotic as I can, to avoid a resistance to antibiotics. 

It's totally a case of two steps forward, one step back. On Saturday I felt pretty good and .possibly overdid it. Today, my head hurts again and I am tired from the steroid induced insomnia. I'm also feeling irritable and impatient. I am not supposed to bend down or lift anything. And I hate having to ask for each thing that I need to be done for me.

Today is my regular Herceptin treatment. I still don't have a date for IT Herceptin

At least I'm sitting in the sunshine as I type this. I just need to chose to be in better mood.

Or not.




p.s.: This totally reads like writing on speed. The steroids make my heart pound and my fingers fly!

8 comments:

Chris said...

Lordy. May each day bring you a palpable respite from the side effects of yesterday. I wish you courage, strength and continued sunshine.

refashionista said...

*hugs* The mug pretty much says it all! I have been thinking about you, Laurie.

MichiganSurvivor said...

My friend -- may this be the marvelous story of you -- long time survivor on Herceptin, now many years post reservoir.

And active.
And happy

Unknown said...

Be in a better mood when you get in a better mood. Until then, read your mug. Hugs to you. Stupid cancer.

laurie said...

Thanks so, so much! Your words all mean a lot to me and help more than you know.

Sue Jones said...

Love the mug. Thanks for the incredible updates. Still drinking coffee? Would love to pick one up for you and sip in the sunshine. Sue

Lene Andersen said...

Or you can chose to have a bad attitude to match the mug. This is a lot to deal with. breathe, my friend.

Susan Fenzl said...

Hi Laurie!
I'd like to send you a big hug from NB...the mug made me smile! :)