Long overdue update

Where did the days go? A common lament these days, it would seem. I've been meaning to update - but something always happened to eat the time available.

All in all, good news all around.

THYROID CANCER
Arno had his Radioactive Iodine treatment in December. He was kept completely isolated in a room for two days and the third day his readings showed that his body did a good job and he could come home.

During his checkup in February we were told that the only absorption of the RAI was around the throat area. That means he is cancer-free and that nothing has spread elsewhere in his body. He has to have another scan and checkup in a few weeks.

His meds seem to be balanced enough and he hasn't complained of anything, but we have to keep watching it. Since he has no thyroid, he has to use medication to replace those hormones.

BRAIN TUMOUR

I saw the brain surgeon on April 18, after an MRI on April 9. He is quite happy with the healing. The picture on the right was taken with the cell phone off his screen, so not very clear,

About driving - that has to be seen! Need to make an appointment with the neurologist who saw me in the hospital and he has to complete the forms to apply for reinstatement of the licence. Then the MTO will take up to 30 days to review the file and decide if I'm to be allowed to drive again. On June 14, it will be a year and after that it will be much harder to try and get the licence back.

LYME DISEASE
In February we went to see Dr. McShane again. She concluded that my Lyme, Babesia and Bartonalla are all still active and on the go. But I didn't want to go the antibiotics road again and am using some alternative ideas, with the urging of a specialist, the support of another specialist and the knowledge of my family doctor.

OTHER STUFF
Some fun events have happened in the mean time!

One joyful occasion was to be part of the cast of a Murder Mystery production. The title: Sam's Last Safari. Poor Sam, the winner of a lottery after a spell by a witch doctor, took an entourage back to Africa. His aim was to bring back a pet lion ... but he ended up being eaten by one!

Much hilarity ensued and the cast had a ball.

There were some travels, wine tasting as usual in the Niagara region with a group of good friends, and lots of work being done. 

Alf Clausen

In December, we celebrated the 100th birthday of my good friend Carolyn's father. Same day as Frank Sinatra, nogal! What a party. Family came from near and far, even from overseas, to celebrate the auspicious occasion. Of course there were congratulations from Queen Elizabeth, and various officials, as well as on radio and TV. 

His grandson (40-ish himself) shared a film he made by interviewing granddad. Alf showed his daily exercises, which include weights, cycling while on his back on a yoga mat, and more. He keeps busy by dancing, dining, card and domino games with friends, walking, church, and reading every label of food he eats. What an example he is! 

We also had snow into April - even though our usual snowy month of February had nothing! My poor snowdrops were encased in ice during an ice storm as well. Such brave little blooms! Hopefully, the warmer weather is here to stay now. What would Canadians talk about, if not the weather??

Thank you for reading, whatever your reasons might be.

PRIVATE POST
If you have been given the password, you can access this post. It is not for public consumption, being of a rather sensitive nature. LINK

Staples begone

It's good, and clean, and fresh, tralala ....

No, I have no idea why that old jingle from my childhood popped up as I started this blog post. An old washing powder ad that still sticks in my head decades later. Maybe because the staples are out of the wound today? I was so ready to have them gone! The wound looks good, has been inspected by all and sundry (some pictures to follow) and I've got a collection of borrowed hats and scarves to cover up if the need should be.

Mind you, when I walked into the doctor's office today for the appointment. I stood in line and then looked over my shoulder to see if friend and driver Sue had sat down yet. My eye caught the face of a young woman, with her eyes absolutely glued to my head. (I did have a hat, but it was in my hand and not on my head ... didn't think anyone would notice.) Her face was like a cartoon image. With bugging eyes, mouth slightly open and sort of skew, head tilted, unblinking gaze. What was she thinking when she saw the staples? Why did she even notice as I blew by her? Did the light catch the metal? Did she just see Friday the 13th? Is she afraid of Zombies??

It was all I could do to twist back forward and not to dissolve in laughter or go over to her to pat her on the head only to have her run screaming the other way!

So here's a quick collage, showing the special staple remover, the staples (28) out and the wound immediately after. Biggest view is the staple extractor, all clean and sterile so Marilyn doesn't have to be too freaked out!

Ten days after surgery

Next stop: Off we went, hunting for animal print socks I "needed" today to complete the look. The previous days were pink, with the pirate's hat from Jan. Bought some funky large earrings to go with it. 

Yesterday was green, and green socks (I love socks) to add. But today just wouldn't work, so we had to go hunting around a bit. Found some funky pink animal print socks. And a pink-ish animal print neck warmer of sorts I concocted on top of the head. 

Five of us were going out for lunch. Anne wanted to see the wound. So she stood up to unravel the hat thingy. Don't believe her face, it wasn't that bad, I promise!

 

Carolyn and Sue watching

Marilyn doesn't like having her picture taken, but we had a good old visit around the table. Great to catch up with friends, good food and laughter. Sue found me gourmet jelly beans --- yes the same ones I spilled all over the bleachers at the softball game! Eveyone had a taste. Today, I mean. Not the ones on the bleachers. The lovely scarf with cats on it is so soft and lovely, and one can never have too many Timmies cards .... Oh yes, and check out these gloves Anne gave me. With more "animal fur" added. She says so I can text in winter. LOL 

Right, the socks. Forgot to show you those.

UPDATE: ARNO's SURGERY + Fall Fair

As reported in the previous post about the surgery on Sept. 16, all went well. Arno was kept overnight to check his levels. Thursday morning our younger son picked me up and took me to hospital, where I sat with my feet on his bed as he stayed in bed ..... and on the phone ... and on the laptop .... working. Yes.  I have proof!

Trying to give the pink a rest, I concocted a green scarf around my head (no flair, unlike my friend Carolyn who always looks lovely in scarves), added a green-print top, green socks and the silver earrings. So that was Thursday -- picture -- and then with hubby in his hospital bed, clearly on the phone, and me wearing the same green scarf. See? He was working, 24 hours after surgery. And yes, I look a bit flat and wilted, I know. Previous day was a bit long!

Around noon, Carolyn picked me up from the hospital and we went off to the Fairgrounds. It was opening day, judging day, and we are involved with the Photography section. I've been convenor for several years (thanks, Pam!) and this year didn't think I'd get to the busiest day with all the surgeries happening. People bring entries the Wednesday evening and Thursday morning, then we have potluck with the judges and the big judging of all entries happen during the Thursday afternoon. The fair opens Thursday at 5 pm and runs until Sunday afternoon.

Thank goodness for an excellent team! Our judge was quick and decisive, the walls were covered in pictures and ribbons quickly and we had done our duty for another year. The entries are down, though --- no idea how to get more people to enter their pictures. Next year's theme will be "Apple Blossoms and Honey Bees" - maybe that will create more buzz!!

Around 3 pm, Arno was discharged after the surgeon stopped by to see what he looked like. Friend Bill picked him up, drove to the pharmacy for prescription and then dropped him at home. I was just deposited at home as well, and both of us zonked out for maybe half an hour or so.

We felt a heap better after that, believe me!  But it was not the end of an utterly awesome day. The doorbell went -- and Sheila breezed in with arms full of tin foil pans and delicious aromas following her. She brought a full meal of pork tenderloin, cabbage rolls, green beans, fresh croissants, a pecan pie (thanks to Donna!).  How wonderful. This is a first time ever for us -- but when we needed to eat last night, we dished up, toasted our blessings -- and had a meal together in peaceful quiet.

THANK YOU. Everyone. Thank you for looking after us. Thank you for caring and sharing your love.

Another surgery

Here we are again - Feels like almost old hat by now!

Friend Joe picked us up around 6:30 am to bring to hospital for Arno's second surgery.  The full thyroid and para-thyroid will be removed today, exactly 2 months after the left side was removed.

Gentle pink clouds on the horizon as the sun rose to greet us.

Thank you for all the messages, phone calls, care and concern coming our way!

8:00 am our time
Things went very quickly this time!
Processed, IV in, blood work done, paperwork checked. Arno is now sitting in a chair, waiting for the anaesthetist, operating nurse and surgeon to come by. If all goes well and according to schedule, he should be wheeled in around 9 am. Surgery to take about 90 minutes. I'll be waiting in the area and update when there is news.

Update: 9 am our time (plus 6 hours in South Africa) 
I'm impressed! Right on time at 9am all three mentioned above came by to talk, check and take Arno to the theatre. Surgery should last about 90 minutes. I'm having a coffee and hash brown while waiting. The surgeon will come find me in the waiting room after surgery to update.

Update: 11:00 am   
No real update yet, since I'm still waiting for the surgeon to come out. Two hours now, but I know
people are checking in. Arno's blood pressure was again quite high before the start of surgery and he had a bad headache. Last time they also had trouble with the blood pressure. I'm sure that's all the delay is right now.

Update: 11:40 am
Just spoke to the surgeon. He said everything went well. He didn't see anything that looked like obvious cancer in the thyroid that was being removed today. They tried to save the para-thyroid so the calcium levels can be better controlled. Arno will stay the night and might go home late tomorrow if all goes well, or possibly Friday.

We have to go in to see the surgeon next week to get the stitch removed and the wound checked. At that time.,we'll also get a referral to see an Endocrinologist to determine next steps.

(www.hormone.org/contact-a-health-professional/endorcrinologyEndocrinology is the study of medicine that relates to the endocrine system, which is the system that controls hormones. An endocrinologist will deal with diseases that are caused by problems with hormones.)

11:50 am - Arno is now in recovery and might stay another hour before being moved to a room on the sixth floor. Depending on his recovery time and being awake, the next update might take an hour or two.

Update: 1:33 pm (7:33 pm in RSA) 
Arno is in his room, is talking and walking a bit. He is still only on clear fluids at this point. He is alone in an isolation room just because there are no other rooms available.

Fresh out of surgery

For those concerned about me: all good, thanks! Friend Sue is here and I'm under strict orders that she is in charge. I have no say .... 😀

Oh, the surgeon was quite taken aback when I asked for a spare nurse to take out my staples. Sort of a family deal. He then grinned and shook his head. Poor guy!

UPDATE FOR THOSE ON THE OTHER SIDE OF THE WORLD

Theo stopped by the house to pick up Arno's laptop, since that can be switched onto the network and he can watch movies if he's awake during the night.
Updated pictures were sent so people can see the improvement a few hours, some rest and pain meds made. The human body is amazing!

Taken around 6:30 pm our time 

Small, tidy wound and thin draining tube

Doesn't he look a little brighter already?


Here's a bit showing the room, with the window looking out over the city to the right. He only has an IV going, and some oxygen to help, but the heart monitor will only be put on during the night. As soon as they are happy with his fluid intake, the IV will be removed too.


Below is a picture of the liquid meal the man had tonight. He felt he needed to share to get some sympathy ... Broth, milk, juice, tea and sorbet.

Hopefully in a few hours the nurse would allow him to enjoy some of the snack foods packed in his overnight bag.

All in all, a good day, although a tiring one!
Thanks again for all the help and support on many levels

~~~  This ends tonight's transmission ..... Field Guide end, September 16, 2015. ~~~ 

 *******

Broken or not?

Hello, friends,
The previous post was password protected because we needed to get the news to friends and family first. We are facing a rather interesting September.

Two surgeries are over already! Our little kitten, Chewy, had to be neutered on Sept. 2. All went well and he is none the worse for wear.

Arno's brother in Australia had to have cataract surgery on Sept. 3. The eye is still a little scratchy, but we have full hope that all will be clear very soon. The second eye will be done later this month.
My brother in South Africa will have complicated surgery on September 9.

My surgery on Sept. 8, as posted before --- also the day our schools start again after the long summer holidays! We have to make sure we get to the hospital early enough.
[Jenni will post updates during the day to this blog. To see if there is anything new if you come back to the same post, hit F5 on your keyboard, or just refresh / reload your browser.]

Added to this busy schedule is that Arno needs more surgery, two months after his first surgery. He will be in another hospital 8 days after mine, on Sept. 16. Wonderful friends are driving to take him to the hospital, maybe visit or bring items, since I would be out of commission and can of course not drive yet.


HISTORY OF THE LUMP

• Sept 2, 2014: I notice the lump on the left side of Arno's neck. 
• Saw our doctor who ordered an ultrasound. 
• Ultrasound found a lump of 7 cm on the thyroid, as well as two nodules on the right side. 
• Try to schedule a biopsy --- finally managed to get one at the end of November 2014. 
• By the way, we were told several times that a thyroid nodule or lump (quite common) is biopsied when it gets to 2 cm or about 1 inch. 
• We were told the biopsy was clear, no cancer. So - we had to wait for surgery. 
• Several months went by and after about five months of no surgery date, we called the doctor's office again. One of the (rather unfriendly) women said it "would take another year". 
• That was unacceptable, so we made another appointment to see the doctor. 
• His comment: "Why do I see you in my office and not on my operating table?" When we told him what the women said, he went with us to order them that surgery must happen by August at the latest. 
• On June 14, I had my collapse and spent four days in hospital. During that time, he got the call that his surgery would be in July. 
• On July 15, the left side of his thyroid was removed. We had to wait for pathology results. 
• A month went by --- no results. I was told to keep calling the office, since they might not call us. Five weeks - no results back yet. That was after we were told originally that results would be back as early as ten days after surgery. 
• Almost six weeks after the surgery, the results were finally back and we arranged to see the surgeon again. I quote: The removed lump was 7.5 cm in size. Of that, 6 cm is cancer.
• When the surgeon delivered this verdict, I told him that his biopsy in November came back clear - no cancer. Did he put the needle in the tiny part where there was no cancer? 
• Then surgery was suddenly scheduled to happen immediately, within three weeks. When I said I have brain surgery on Sept. 8, the surgeon let fly a rather strong exclamation. 
• Is our health system broken? You tell me.  
• Arno will have a full thyroidectomy --- a year after the lump was first noticed. 

Thank you to everyone who cares, who prays, who sent messages or cards, offered help, driving, cooking, fun and joy! We love you, we appreciate you and we are being held up by you. 

Surgery updates

Thyroid

Less than a month after his partial thyroidectomy, hubby already played softball again! The healing is amazing.
Below is a combination picture - taken less than 24 hours apart. The first one was taken shortly after surgery. Tape measure is around his neck to check for any swelling.
The next day, the tape measure was gone and he looked a little bit more "there"! The draining tube was removed about 24 hours after surgery and only left a small scab.

A week later, we had to go in for the stitches to be removed. Since it was only a single stitch, sort of like a blanket stitch (new to us!) I hardly had time to get the camera in place for a picture! He said it was more trouble to have the steri strips being pulled off than for the stitch to be removed.

The surgeon was happy with the result after seven days. We are still waiting for the pathology results of the removed half of the thyroid, though. I was hoping to have that ready and was holding off on this update for that reason.

Picture to the right was taken a week and one day after surgery, only hours after the stitch was removed.

Thank you for all the messages of concern and offers of help!

Meningioma

If you read a previous entry on this blog, you would know that I was diagnosed with a brain tumour, called a meningioma. My surgery is still scheduled for September 8 at Trillium hospital. By all accounts, their neurological department is excellent. (And it seems they have better coffee than Brampton Civic, which will be a plus! But I'm packing my rooibos teabags anyway.)

Realized last week I might need blood transfusion for my surgery. My sons have been blood donors for about 8 years, and I can use both their groups. I am A+; so is younger son and elder son is O+.  Called to ask if they can donate blood to be used for me, found out I would need about 2 litres during surgery. So that is in the works.

Blood Services Canada said  a parent can donate blood to be used for a child's surgery, but an adult child can't donate blood for a parent's surgery. Silly and makes utterly no sense! Now the surgeon's office is trying to let me know how we can go about using the boys' blood. Voicemail was garbled , though. I said if it is too much trouble, I'd just ask my sons and a few friends to go donate blood, which means the general pool gets replenished.

Oh yes, and the hair! So may people asked if I will have to shave my head. The surgeon said they'll shave what they need, but I decided to have fun with it. So did the hairdresser. She created a funky, spiky hairstyle, which will be cut once more before surgery and go quite a bit shorter. Another friend is making me a very bright hat so that people don't have to get sick when they look at me after surgery!

Here is a picture with a friend on the city plaza while we were enjoying the Farmer's Market. I'm the one on the right .... What do you think?

I'm still playing with it and learning how to do different things with the spikes. Part of it is adding some colour, using cream eye shadow. It works, and washes out with shampoo.

As for symptoms - headaches, fatigue (especially while working on the computer) and sometimes an unexplained twitch of the leg or arm might all have to do with the mushroom I'm growing in my head.

A very interesting year for us, indeed! 

Thank you to friends and family near and far, who carry us in thought and prayer. 

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.  :-)