Life and death...

Things can turn so quickly. From good to bad, to awful, to shocked, to relieved to saddened and heartbroken. Various emotions for an assortment of events that occurred since my last entry. I rebounded from my breakdown after a few days, as I usually do. Sadly, I had a few people really worried, sorry. I mostly keep my feelings inside but I was so frustrated with so much all at once that my last entry, I hoped, would help me get it out and try to get back on an even keel. Then an angel swooped in out of the blue. A friend who shall be simply *S* came forward and handed me a cheque for the total amount of my disability repayment. She wanted nothing in return. I was and still am speechless, how many people can just give that kind of money away? She insisted, I cried. Those who know me well, know how difficult it is for me to accept from others, this was more than I could ever imagine. Thank you *S*, as I've always said, you are a God-send to me in so many ways. So with that stress off my shoulders, I let my guard down I guess you could say, and I get sick. Not cancer sick, cold sick. Between stuffy, drippy, coughing, and, well, I won't describe anymore functions that are out of whack, I've been feeling miserable. I am at the tail end of my cold, thankfully. But new problem. I have a ver sharp, burning pain in my right breast. I can't find any lumps, but holy heck does it hurt. Thankfully I have my oncologist appointment day after tomorrow which includes an x-ray and bloodwork. Hopefully we can figure out what is going on.

I know this is my blog about my cancer journey, but as a mother, with 4 children, my youngest being 9 and 12, I must mention the 20 angels who lost their lives far too soon and to the adults who lost theirs as well, on Friday in Newtown, Connecticut. I cannot even fathom what these parents, families and friends must be going through. Regardless of your beliefs or non-belief, please keep these families and this community in your thoughts and/or prayers this holiday season. Makes my problems seem so small. Thank you.

Charlotte Bacon, 6
Daniel Barden, 7
Rachel Davino, 29
Olivia Engel, 6
Josephine Gay, 7
Ana Marquez-Greene, 6
Dylan Hockley, 6
Dawn Hochsprung, 47
Madeline Hsu, 6
Catherine Hubbard, 6
Chase Kowalski, 7
Jesse Lewis, 6
James Mattioli, 6
Grace McDonnell, 7
Anne Marie Murphy, 52
Emilie Parker, 6
Jack Pinto, 6
Noah Pozner, 6
Caroline Previdi, 6
Jessica Rekos, 6
Avielle Richman, 6
Lauren Rousseau, 30
Mary Sherlach, 56
Victoria Soto, 27
Benjamin Wheeler, 6
Allison Wyatt, 6

Overwhelmed

Today I had an emotional breakdown. I shouldn't say had, more so still having. My son refused to go to school again today, that set me off. *I* had to take the dog out for a walk, when he is paid to do it. That is going to stop. I am so worried about paying back this stupid overpayment to the government. Found out that because we are a family, hubby is liable too, so even when I die, he will still be responsible for MY bill. Yesterday I was told I committed fraud by not reporting the other payment. I felt like a criminal. I honestly didn't know. They made me feel horrible. They should be charged for taking a year to find the error. Going through so much red tape to get my oral terceva renewed, between the cancer clinic, my pharmacy, the drug company, my insurance, my doctor and the cancer pharmacy, you wouldn't think it should take this long to get things organized. But that's okay I will just sit here and die a little faster while you all sit on your asses. Apparently I'm angry too, who knew. I wanted this to be a wonderful Christmas (in case it's my last) Didn't get nearly the things I wanted to get for the kids (no funds).  I still have bladder and bowel issues I am dealing with on a daily basis. I can't catch up on housework. I have longtime friends and family who seem to have fallen off the face of the earth. I feel like I am on an emotional roller coaster. I am sure there are more things but perhaps I'm lucky I have short time memory loss or I might end up in the loony bin.

Woe is me, yeah, so what.

Oh I forgot something, on top of that, I got a bloody nose for the first time in my life. hurray!

FML (sorry)

And yes, I am *very* aware there are people with much bigger problems in this world.

Taking it all off....

Remember years ago how I cried my eyes out over losing my hair?  Well it grew back enuf, I bought some wigs, and all was good with the world. Lately my hair has been doing very strange things. It's both been growing in, but in little tufts, and also slowly falling out. I can't get it to lay flat, I have thin patches, receding hair line, thick spots and bald spots. I can only describe it as looking like clown hair. Go ahead, laugh, I do. But I finally got fed up.  Went to the hair dresser and asked her to take it all off. One thing led to another and we were telling each other cancer stories. When she was done, I headed to pay, she disappeared. I waited, she returned, saying "This one's on me". Thank you Angie, you didn't have to do that, but as small a gesture that may have been to you, it was huge to me. I am one of those people that must pay it forward. I can't wait to help someone else that might need a little joy in their lives. And I can honestly say, I love my bald head.

I've had such a wonderful day today. Other than zac refusing to go to school, I've gone outside several times with Chase. Between the buildings is about 3 feet deep of fallen leaves. I started kicking them, Chase started jumping, I had so much fun! I don't know when the last time was that I kicked fall leaves. I feel happy. I walked back from the grocery store, I barely make it (tired) but I'm going to try to do it once a week. I know that doesn't seem like much to most people, but I have trouble walking up 10 stairs.  I have to cross 2 streets to get home from the grocery store, takes about 10 minutes. Today is an incredibly beautiful day. It's warm, sunny, the fall leaves are vibrant, falling down around me, squirrels scampering everywhere, beautiful blue skies. As I sit here and type I can barely see the keyboard on my laptop, my cat Mau is laying across my chest, because although the living room is drenched with sunshine, my chest seems to be his spot of choice today, ah who am I kidding, everyday....His purr is so loud lol Chase is flaked out on the couch beside me, letting out big sighs, drifting off to doggy dreamland.

Well I guess I should get to the medical stuff. I had a CT scan of my chest, abdomen and pelvis on Oct 14, 2012. Findings were as follows:

1. Tumour on left lobe of my lung (original one) has not changed, still 1.8cm x 1.2cm

2. The tumour I was worried about near my heart (docs were worried to) has shrunk from 1.7cm to 1.4cm. Keep in mind that any smidgen of a decrease is a good thing when it comes to cancer.

3.Nothing wrong with my lymph nodes

4. Medical terms: Sclerotic lesions in the right hemipelvis, sacrum, upper thoracic spine, and several ribs, are again noted, unchanged.

5. Overall no significant change since July 2012.

Hot damn am I glad that one tumour shrunk tho, could have caused a lot of serious problems for me if it was rapidly growing.

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I had an MRI on Oct 3 2012

I have mild degenerative disc disease from discs C2-3 and C6-7.
At C4-5 and C5-6 I have disc-osteophytes (bone spurs) which for now is not causing me pain.
Because of the bone spurs, I have also developed canal stenosis, mild to moderate at C4-5 and mild at C5-6.  I have mild degenerative disc disease at L2-3 but no canal stenosis there.

They did make note of the two largest tumours I reported awhile back. Lower left lung, one being 2.3 cm and the other 1.8 cm.

I don't have any tumours between my spinal discs and no cord compression

Sing along!!! There's a hole in my arm dear nurse, dear nurse...

Holey crap (yes holey is spelled right) I'm surprised when I drink I don't flow like a fountain! First needle put in to get blood work, blew a vein but she was still able to get the vial of blood. Huge bruise. Had to put in another needle in a second spot to get 2nd vial. No problems. Then off to the chemo room to get my promiginate IV, thank God Shelley is so good at what she does, first shot! Then off to the blood lab on Princess St to get one more vial taken to monitor my valproic acid levels (for seizures). Leslie is a pro. It's a good thing I'm one of those people that needles don't hurt or bother me lol. But, geesh I'm so bandaged up I look like I was in a barroom brawl!!

Doctor appt went well. I've lost another two pounds (yay!) No worries, I still have lots of extra fluff :) Went for an x-ray, will know next month if I have any changes. Having some pee-ing problems, hey warned you from the beginning I was going to be an open book! Gave a sample, but she also wants me to go for an MRI on my spine. I got that info in a phone call after I got home from my appt. That worries me a little since I know that I have tumors on my spine.  Yes, while we are on the topic of pee, we might as well go all out and talk about poop too. It's not fun to be explosive at a seconds notice. So far I've made it, but it's been close. Doc thinks it's my chemo meds so has prescribed me meds to try to fix the issue. That would be really nice because even the BRAT diet isn't helping (Bananas, Rice, Applesauce and Toast). So you see my friends, I may look good on the outside lately but man, are my insides a jumbled mess.

My physical exam was great. No lymph node problems, breathing was "crystal clear" as my doctor put it and everything else looks great. So just going to work on getting my innards to work properly and wait impatiently for my MRI.

Hugs!!

HAPPY 3 YEARS TO ME!!!! Thank you for all the love and support along the way <3

 

A little bit of sunshine in what seems to have been a very sad month.  My insurance company and my pharmaceutical company have approved the payment for my $2,900 a month medication for the next 6 months. I was NOT looking forward to sitting in a chair with an IV for 3 hrs every 3 weeks. Thank you Desjardins Ins and Roche Pharmaceutical. And thanks to my husband who works for a great company that provides amazing coverage for all our medical needs. (medical, dental and vision)

September is usually a very happy month for me in past years. My birthday, my brother Jim's birthday, my daughter Zoe's birthday, my friend Tammy's birthday, my friend Susan's birthday and about a dozen more birthdays, literally this month.

Last year was a sad year when we lost my brother in law Charles to cancer on my birthday.  My birthday was a wash, but we were sure to celebrate Zoe's birthday 2 days later.

This year September started off with another tragedy. My dear friend Gina lost her husband Peter in a work related accident. He left behind 3 young children as well, Kelsey, Marissa and Andrew. We were all devastated. Gina was holding up well at the wake, in fact more than most visitors. She is such a strong woman. The funeral home was crowded with people of every age from young to old. His TTC (Toronto Transit Commission) were dressed in their finest work dress and lined the doorway to where his coffin lat, smothered by flowers. More flowers filled every room. Everywhere you looked were photos of Peter and his children. He loved those children with a love I've only seen in a few other fathers.  I saw the kids, they seemed okay.  It was a sad day.

Here is the newspaper report from CBC

A Toronto transit worker who died on the job was remembered Wednesday as a devoted family man whose integrity and generosity inspired those around him.
A large crowd of friends, family and colleagues gathered for the funeral for Peter Pavlovski, 49, who died Friday after being hit by a service train just north of the city.
The married father of three was a Toronto Transit Commission employee for 22 years and had just celebrated his 20th wedding anniversary the week before his death.
His niece told the packed east Toronto cathedral, and those who watched the service on large screens in a second hall and outside, that her uncle was "someone you could look up to every day."
Peter Pavlovski, 49, died after being stuck by a subway maintenance train on Friday. (TTC)"We always knew that he was loyal, a very loyal, dedicated family man that worked extremely hard and had that Pavlovski work ethic at everything he did," Melanie Pavlovski said.
She choked up as she recalled her uncle's "distinct and contagious smile" and his close bond with his large family, whom he often brought together over lavish and delicious meals.
"We also learned in the past couple of days about how much he was respected and loved by his colleagues at the TTC," she said, noting many considered him part of their "work family."
A large number of TTC workers were among the mourners, many of them wearing black armbands — a tribute to a colleague killed in the line of duty.
TTC buses, streetcars and subways came to a halt at 10 a.m. and paused for a minute to honour him.
The commission's CEO, Andy Byford, said Pavlovski was well-known and very well-liked.
"There's a real sense of trauma, a real sense of shock, but I think today will translate really into a sense of pride that we knew him and that we loved him," he said outside the church.
Pavlovski was supervising a crew of seven workers on an elevated track area when he was struck by the southbound train just before 5 a.m.
A second man was also hit but suffered only minor injuries. Toronto police, the Ontario Ministry of Labour and the transit commission have all launched investigations into the incident.

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Then of course the loss of my brother to suicide many years ago, his birthday Sept. 11

and mourning the loss of all those killed in the attacks of 9/11 .

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My brother Charles who lost his battle with cancer last year, September 15, 2011.

 

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Needless to say, I do NOT want another September like this one.

 

Well I was a little shocked when my nurse came today. She did all the various check-ups, temperature, blood pressure, breathing, a zillion questions, pulse etc. All was the same as usual. Then she proceeded to tell me that I was being discharged as a patient. I have no symptoms, so they didn't feel it was necessary for them to check on me every two weeks or even once a month. Basically, I'm dying but because I'm doing it so damn well, I don't need them anymore. Go figure.

Bittersweet.

Goodbye Shannon, Vera and Chris, you are all in the right profession, you've been amazing! I shall continue to die (and live) gracefully :)

One more tidbit, Had an MRI a few weeks back, nothing has grown or shrunk in the tumor department, but a sac of fluid pressing on my brain is completely gone. I am convinced that was where my "blond moments" were being stored, so what will be my excuse now? lol ;)

Well I have back on chemo since Friday August 3rd. Thankfully it's the Tarceva pill again (10mg), once a day. So far it gives me the runs and I feel a little nauseous in the morning. Nothing I can't deal with. So far my hair has remained intact, little that I have. Other than that, I just had an MRI done. I panicked so she had to pull me out and we had to start again, it's a very confining place. Should get the results from both the x-rays and MRI at my next appointment August 29th.

Right now I am enjoying the company of my dear friend Nikki from Indiana. Haven't seen her in a few years, and it's like it was yesterday. She makes me laugh.

That's my latest update.

Rainy day brings dismal report

The painting above was on a door in a small museum in Watertown, NY. It captures me everytime I look at it. It has nothing to do with my entry :)

Today I had no worries about getting my cat scan results. I have been feeling great, conquered spelunking, went on a crazy, for me, hike. No headaches, more energy,everything seemed good. Well CT scan results, not so good. In April I had 2 new tumors that were much larger than any of my others, granted still millimeters, but all under 2 digits. My 2 new ones were 10mm and 19mm. Today my ct scan showed those two tumors have grown. The 15x8 mm tumor is now 18x12 mm, this is the one that is sitting on top of my biopsy scar on the back of my lung. The other new tumor that was 11x15mm is now 17x20 mm. This is the one near my heart. They are growing quickly in comparison to my other tumors.

Dr. T told me that now is the time to start thinking about treatment again. It wasn't a rush, my organs weren't failing or anything, but the one by my heart causes concern. If it starts to inflame the lining of my heart, then it will be a big deal and we want to try to do what we can before anything drastic happens. I made the decision to start therapy right away. I am going to go the Xgeva pill way again. This is the one that I had a bad skin reaction to, but doc is going to give me a lower dosage and we will see how it goes. Just have to wait a day or two for insurance approval again, don't have $2600.00 laying around for this prescription! lol

If the pill doesn't show any progress and the tumors continue to grow, we are back to chemotherapy once every 3 weeks, chest x-rays, ct scans, bloodwork etc as long as needed. I will continue to have my bone therapy once a month during this procedure. I also have an upcoming MRI just to get my head checked, no comments from the peanut gallery!! lol

I am SO NOT HAPPY about the possibility of losing my hair for the third time. I know it's stupid but that's how I feel. Well, that's it for tonight. I am off to have an ice cream cone.

Bucket list, another adventure ticked off the list

My husband has been working very hard on doing fun things every weekend for the kids. Today we went to Hell Holes Nature Trails and Ravines I though there would be more spelunking but it was basically a hole straight down and a small cavern off to the left. Still exciting and still another item off my bucket list. Saw a wicked cool HUGE spider and several albino caterpillars in the cave. The climb both up and down was difficult, it involved ALOT of upper arm strength to prevent you from falling into the abyss, but all of us, Peter, myself, Zachary and Zoe all managed to do it. The trails were AMAZING, I have never seen so much green in my life, the trees, grass, lichens and especially the moss was thick and abundant, as were the mosquitoes. The rocks were massive, the trees went up forever. I have photos that will show you the enormous size of these natural structures. Trails were a bit bumpy in places, many hills, quite the workout. At one point I tripped and nearly went rolling like a tumbleweed, but Zoe stuck out her walking stick and stopped me, right in front of a very large boulder. I had to sit and compose myself before we continued on. It was a 3.2 km trail, hitting 2km may not be a big deal for some people, but for me it's HUGE, we stopped many times and at one point I became very dizzy and sat on a bench. A nice couple came along and Peter asked if they had water we could buy, he just gave it to us, stupidly we forgot ours in the van, you can tell we aren't avid hikers anymore lol. But I soldiered on (love ya Bre, he helped) and managed to get to the end where I felt like collapsing but was elated that I actually made it. I was so proud of everyone doing the cave and so proud of myself for hiking those hills and valleys ! Yeah me :) Hope you enjoy the photos :)

( and a pic of a gorgeous June bug on our back porch too :))

I have lots of photos to share, but the first 3 are from Bruce trail 1. crawling into the small cave to reach the larger cavern. 2. small open area. 3. Looking from down in the cave up the ladder to where you get back out.

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