Wednesday, July 15, 2015

One surgery down!

(Posted from iPad so annoyed with limitations.  Forgive mistakes! Please hit F5 or update to see any edits) 

Thank you so much to many people all over the world for messages and care, prayer circles and more after the previous two posts on this blog.  We appreciate each one and stand amazed at the concern of friends and strangers.

Arno had his surgery today.  All went well.  I spoke to the surgeon afterwards and he was pleased with the outcome.

Only the left side of the thyroid was removed, which is good news indeed.  The right side was left and will be tested in about six weeks.  If enough hormones are manufactured, he won't have to go on medication.

The part that was removed, will be tested and the results will be back in about ten days.  If it is clear (no cancer) a second surgery to remove the rest of the thyroid won't be necessary.

The stitches will be removed in a week and the wound checked.  There is currently a drain to remove any fluid.  He is staying the night because of the C-pap machine (sleep apnea) and should be discharged by lunchtime tomorrow if the doctor is satisfied. Then he has to take it easy for a few days.  No lifting things, no driving, no stress, rest, etc.

For those who might not know, the thyroid is like a butterfly around the throat. See image below.

From Thyroid Gland

Arno's incision today with draining tube in place.

Tuesday, July 07, 2015

Consultation with the Neurosurgeon

Hello, everyone!

First of all, thank you for all of the calls and messages wishing Marlene well today! They have not gone unnoticed but she figured it would be easier to do a big post so that everyone could get an update at the same time.

Marlene and Arno went to the Queensway hospital this afternoon to finally have a neurosurgeon review her MRIs and give his opinion on what her next steps should be.  After a bit of a wait while he took a look at her scans, he was to the point and up front with the situation. An MRI from back in 2008 did not show any signs of the growth, meaning that this is a much more recent development but due to its location on Marlene's brain, there is some risk in removal (continued or increased seizures if the tumor cannot be removed in its entirety). She asked the doctor what he would recommend if it was someone close to him and he confirmed that he would still advise removal over leaving the mass to most likely grow further and possibly cause more problems down the road.

At this time, there is an appointment made for Sept 8th for surgery, but updates will be provided between now and then if it requires rescheduling.

Thanks again for everyone's well wishes! We will continue to update this blog as we get more news/developments, but please feel free to leave comments for Marlene and Arno during this process.

Friday, July 03, 2015

Mah Mushroom

People who visit this blog might have noticed the lack of regular posts the last few months. I stepped back from the activism to get help for Lyme patients, but thank the Lyme community humbly for a tribute they posted. A lot of things have been happening these last months, and this July, many of those might finally come to a head. I'll try to summarize in a succinct way! There are a few headings here below; skip or read at your own discretion, please.  :-)

The bruising

For more than a year now, weird, large, very sore black bruises have been appearing on my legs without any trauma.
I've once again been referred for many tests, including oncology / hematology. Blood taken - 18 vials on Halloween (how's that for irony! LOL) and then referred to the McMaster University Medical Centre in Hamilton for yet more tests. Twelve vials the first time and ten vials a month later. They are sure it is vasculitis, probably a complication of my Rheumatoid Arthritis (RA) but my rheumatologist doesn't agree. Those tests and visits kept me busy with no real answers, so I called it quits. I'm happy. Forget a diagnosis and I'll just deal with the bruises. And no, hubby didn't beat me up or kick me back at night when my Restless Leg kicks in! (Pun definitely intended.)

The boob

In April I had a mammogram as part of the Ontario screening program and was called back a week later for an ultrasound. There were "things" found in my left breast and I have to go back in October to have that checked out again. No worries, though, I wasn't going to post a picture of THAT!

The lump

In September last year, while on vacation, I noticed a large lump on the left of Arno's throat. We were out of the country but managed to see a doctor who called in a second opinion. Back in Canada, ultrasound confirmed a 7 cm (2.75 inch) nodule on his thyroid, and two more nodules on the right side.
 A needle biopsy found no cancer. The surgeon said the lump has to come out, though, and because it is so big, cancer is not completely excluded through the biopsy. However, even if it is cancer, it is very slow growing and should not be life-threatening. We have now been waiting nine months for a surgery date.

The collapse

In the middle of June, while we were busy making a batch of antipasto to have on hand for the summer, I felt weird. This was around 5 pm on Sunday night, June 14. While walking upstairs to collect laundry, I suddenly couldn't see, the stairs were jumping all over the place in my vision, I felt very confused and sort of out of it. My left side felt as if it was under water and had to be dragged along. On the landing I was even more confused, forgetting where I was going. I walked to the bathroom but had "forgotten" I had a left side and walked smack-dab and left boob first into the door jamb, rattling the house. Arno thought I had fallen down but I kept calling to him I couldn't see. I turned around, minus laundry, and tried going back downstairs - no, I don't know why! Told you I was confused! Almost fell off the stairs several times because I just couldn't focus. Back in the kitchen I felt like a padlock was hooked into my left cheek, pulling my whole face down. I tried to talk to Arno but he couldn't make out what I was saying, since my speech was slurred.

He made me sit on the floor while he finished bottling the sauce, where I looked up the symptoms for a stroke or mini-stroke (TIA). He drove me to Emergency where we were processed very quickly and into a room with ECG within half an hour. Two doctors gave him heck for not calling an ambulance - which would have taken me to the Stroke Centre. We didn't even know it existed.

The next test was a CT scan, which found a mass in the brain. Then an ultrasound of the neck veins. Around 11 pm yet another doctor came by and mentioned a few possible diagnoses. They were going to keep me for an MRI. Arno went home, and I spent most of the night on a cot in the busy ER, then a few hours in a corner of a hallway near the nurses' station in the Neuro ward.

An MRI confirmed a brain tumour called a Meningioma. I just dubbed it Mah Mushroom. Growing quietly in the dark. Yes, I had symptoms over the last few months but have mostly ignored them. I am even using a bath chair and handle, borrowed from a friend a few months ago because I felt unstable while taking a shower. A few times the headaches reduced me to tears. A feeling of a vice screwed tightly around my head has been ongoing for several months, as well as visual disturbances. I think my blocked left ear might also have something to do with it.

A Neurologist came by around 10 pm on the Monday evening. He spent a long time and said I have to be put on anti-convulsants to avoid seizures. What I had was not a stroke, but a seizure due to pressure on the brain. I was in hospital for four days, and the seizures continued on the left side until the meds kicked in by the Tuesday evening.

After just a week, my old bod went into its usual shenanigans and rejected the meds. I had hives, spots, galloping heartbeat, headache, sweats and shakes. So of course the meds had to be changed - or live with the seizures, which was not an option according to the doctor. I've now been on new meds a week, and so far, so good.

The tumour is near mid center membrane in brain, on top of the head, so might involve some of the large veins, possibly the bone of the falx and other things.

On July 7 I have an appointment with a neurosurgeon who will talk about the following steps, surgery or not, when and where.

I had to return my driver's license and am grounded until such a time as my doctor deems it would be safe to drive again. It might be several months, up to a year. But I have AMAZING friends who all swooped in and offered to drive me / us to and from hospital, to and from appointments, shopping, church and the like. How blessed are we???

Oh and guess what?? While I was in hospital, Arno finally got the call! His surgery is on July 15. What an interesting month for us!

Not knowing how things might progress over the next few days or weeks, I've set up a ......

Guest Author

Jenni - She's family, she is articulate and she is an artist. But most importantly, she said "yes" when I asked if she'd take on the job! When / if I have surgery, I might be out of it for a day or two. Friends (bless them!) and family want to be kept updated, hence asking Jenni to do the honours. The posts might be graphic, might include pictures, might sometimes be meant only for family and close friends. In that case, a post might be password protected for a while. Lots of "mights", I know, but guess that is where we are at this particular time.

Please check out Jenni's artwork! She has a website, a Tumblr account, Instagram and a deviantArt account. Her Bio is on The Caffeinated Rose Bride, with other links at the bottom of that post.
Jenni - as I see her (copyright Jenni)
The way she says she is! (copyright Jenni)

If you are still reading, take a break for bravery!
But thank you for caring. See you on the flip side.  :-)

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