My 10 things

I saw a post on my Facebook wall a few days, or maybe weeks, ago posted by one of the chemo support sites I randomly decided to follow during the dark days of chemo. It was a blog post that has apparently gone viral but I hadn't seen it before. It really made me start to think about my life and the things I do and don't tell people.
The original post was from Roadkill Goldfish. I don't know anything about the blog or its writer other than the woman has thyroid cancer, but here is a link to the post http://roadkillgoldfish.com/friends-cancer-want-know/.

Since I finished chemo and no longer deal with the crazy steroid induced insomnia of treatment day I haven't done any fun posts so I thought while not necessarily fun it would be worthwhile to do a similar list.

Here goes......

1. Chemo does not suck. 

Cancer really, really, really sucks. Chemo kills cancer cells. And you know the saying, the enemy of my enemy is my friend. Nuff said.

2. Being called strong, inspirational, heroic, a fighter or any of the zillion other words people use for cancer patients just feels weird.

I suppose I could spend the rest of my life curled up in a little ball and hiding under the bedcovers but that seems a little pointless. Why go through all the crap I've already been through and all the crap I still get to go through just to do that? Instead I do what I'm told, jump through the hoops and enjoy my life as much as I possibly can, but I don't do anything different from what everyone else in this situation does. Seriously, when was the last time you read about a cancer patient that didn't battle valiantly?

3. I do occasionally spend time curled in a little ball hiding under the covers crying my eyes out.

I think it is just necessary. It is like an emotional reset button. Once it is over I get up and get on with living again.

4. The next time I lose my hair it is going to be a disaster.
You have now officially been warned. Losing my hair once is ok. It is part of the chemo process and fortunately I have a nicely shaped skull, but I'm sorry, having to go through hair loss a second time is just plain cruel.  Plus, it turns out I love my chemo hair is even more than my old hair which will make losing it that much more difficult. I can only hope it is a long time until I have to go back on chemo.

5. Do everything you can to reduce your cancer risk.
Let me repeat, cancer really, really, really sucks. You do not want to go through this and I wouldn't wish it on another living thing. I am proof that a healthy lifestyle doesn't necessarily prevent cancer but you should still do whatever you can to decrease your risk.

6. When bad stuff happens to other people I have sympathy and compassion for them.
Life is not a contest. There is no bad news measurement stick. When I hear bad news about someone whether it is about the death of a family member, a fender bender, a sick pet, or any other bad whatever that happens to everyone that is human I don't compare the situation to my own. I take the news for what it is, bad news, and offer support.

7. I am so jealous of everyone that is working.
I am surprised no one has commented on the blindingly green shade my eyes must turn whenever someone's job is discussed. Being 2 1/2 months into my dream job and then getting handed a cancer diagnosis kinda makes we want to start screaming and throwing dishes. Fortunately for the dishes that also sounds exhausting so it ain't gonna happen.

8. I appreciate every email, text, or message you send me.
I probably should tell everyone this all the time but I am terrible at responding to those same emails, texts, and messages. I do promise that I will eventually respond to all communications.

9. I can be fine today and dead in 3 months.
I live with that every day. I watched it happen to a woman in her mid-40's with a similar diagnosis to mine last year on one of the online support groups I belong to. I find it much easier to get out of bed every day by just putting it out of my mind, but it still colours many aspects of my life. So, if I suddenly go crazy and drop everything to go on a trip or even just buy another pair of shoes by all means come join me, it might be my last chance.

And on that note,

10. Stop and smell the roses.

Actually, I have told you all this before. I wrote an entire blog post about it. Here's the link in case you need a refresher http://nspip.blogspot.ca/2014/01/stop-and-smell-roses.html.

If I think of it, I'll review this list in about 6 months and see if anything has changed. Now, I have to go make some chocolate cake, gotta take #9 to heart ;-)

A little neurology goes a long way

I saw a neurologist last week about my tongue thing.  He was fantastic and I am very happy to have him as the newest member of my healthcare team.
The good news is that I do not have MS, ALS, or epilepsy.

Due to some very old scar tissue in my brain my neurologist suspects that my tongue issue may actually be congenital and for some unknown reason has decided to start showing symptoms now. It is possible that for another unknown reason the radiation I had to my skull is what kicked started the symptoms.
My neurologist would not be surprised if the symptoms disappear as suddenly as they appeared. I am going to hope for that.

At this point it doesn't feel like the symptoms are appearing any more frequently which is good. If the symptoms do get worse and start impeding my speech more my neurologist has offered to send me to a speech pathologist if I deem it necessary.

Early on Saturday....... Yes, Saturday.......morning I had to go to Victoria General for my first infusion of Pamidronate. This is the new bone drug I am switching to, replacing Clodronate. I was getting really tired of the timing of Clodronate since I had to take it first thing in the morning then wait an hour to eat.
Turns out one of the great things about Pamidronate is that in the future I will have to go in to get my IV inserted and the drug attached but then I can go home. The drug is infused using a portable infusion pump bottle and not a regular infusion pump.
This is what the bottle basically looks like:

The balloon inside is filled with saline and the drug is added. Then the balloon slowly collapses and the drug solution is infused. Pretty cool.

I have to remove my IV after the drug finishes running, but that is fine if it saves me from 4 hours of hanging about in a hospital.

After I got home from that adventure I felt okay. For Valentine's Day dinner it was cheese fondue and pain au chocolat bread pudding. Very tasty.

By the time I went to bed I was definitely feeling off. Heart burn, achiness, and general grossness. I still had some of the peppermint spirits I used during chemo for upset tummy and it worked its usual miracle.

Sunday morning I woke up and I believe I felt sort like a person would about a week after being hit by a bus. Every part of my body ached except for my left elbow and I was so tired. I'm not quite sure why my elbow got to escape the joy.

After some Tylenol and several hours of not moving on the couch the ache started to fade. By Sunday evening it was pretty much gone. Monday morning I felt normal again.

Now I know, the day after Pamidronate will be a write off. Over time I am hoping the side effects will decrease.

Ok, back to waiting for surgery dates.......

The saga continues

Hmmmmmmmm.............la la la la la la la la la.............I don't remember where I left off in my last post (if I knew how you'd be listening to the Jeopardy theme as you read this) and I don't feel like going back and rereading it. I think I'll just wing it.

January has been chaotic.

I think I have already posted that the bump above my mastectomy scar and my enlarged lymph node were both positive for breast cancer and the node is estrogen receptor negative so the zoladex and letrozole I am on are not useful in slowing cancer growth.

The second week of January I was scheduled for a breast MRI and I also started getting a weird new thing going on with my tongue. Just before I went to bed on Monday I lost control of the back part of my tongue for a couple of minutes. It was very strange.
On the Tuesday afternoon I went for my breast MRI. Not overly exciting, lie on a bed facedown and don't move. The machine used to take the pictures includes a large magnet (Magnetic Resonance Imaging) so there are a few interesting pre-test questions. The most interesting one, have you ever had any metal objects, such as iron filings, stuck in your eye from maybe an industrial type accident? Doesn't that offer up a rather gross and extremely painful mental image? Yowzers!!
They also ask if you have any shrapnel, joint implants, a pacemaker, or other random metal medical items stuck inside you but the eye question is the one that really gets me.
The sucky part of the test is that while each set of pictures is being taken the machine makes an incredibly loud noise. The tech puts headphones on you and cranks music through them while the pictures are bing taken, but it still sucks. There are 5 or 6 sets of pictures taken and each set takes between 30 seconds and about 3 minutes. If you have decent hearing the end really can't come soon enough.
I stopped to do some shopping after my MRI and the tongue thing happened again. It happened a few more times that day. So annoying.

On Wednesday the tongue thing started up just after I got up for the day. It only lasts for maybe a minute or two each time, but now that it is day 3 and happening more frequently I emailed my oncologist to tell her about it. She responded right away and agreed that it seemed very weird and she was going to send in a request for me to get a head CT done to see if showed anything new.

On Friday I met with my surgeon to discuss the lymph node issue. It is generally agreed that the lymph nodes should be removed. She had the results of my breast MRI and it is possible that there is actually breast tissue involvement right at the lymph node as well as the lymph node being cancerous.
Also, it turns out that when she removed my bump one of the margins was not clear so she needs to go in again and remove more tissue and hopefully get a clear margin then.
I asked about lymphadema and blood work and scans and treatment if I get the right side lymph nodes removed. I got the normal surgeon response of "there is no real proof that getting iv's or blood work done will actually cause lymphadema" speech. And, as she pointed out, I have lymphadema on the left side so it could be used for procedures now since we are no longer trying to prevent lymphadema. True, and I have no idea why I got the lymphadema anyway. I had no visible cat scratches (probably for the first time in ages) or any other injuries I could see so having it occur when it did is a little weird.

I also learned at my appointment that the cancer in my lymph node is still Her-2 positive. That means herceptin should be effective but it is currently not preventing cancer cell growth. That is finally some sort of good news.


Immediately after my surgeon appointment I had to go zooming over to Vic General (my surgeon's office is across from the Jubilee, so pretty much across town, and of course the appointment was late starting) to get my head CT. I am still a little stunned that I got fit in less than 2 days after the request went in. A little scary.
The head CT was uneventful, except for the 20 minutes it took to find a parking spot, and I was told the results would be ready early the following week.

On Saturday I headed off to Vancouver. I had a wonderful visit with everyone!! Thanks for all the distraction and fun, you all really help keep me from being boring and dreary and overwhelmed by all the crap going on. And extra thanks to Laura, Ian (Laura's Ian, not my Ian ;-)  ), Polo, and Pi and Keetah, David, and Satori for putting me up while I was over!!!

I had my PET scan at the Vancouver cancer centre on the Tuesday. It is the really fun test that does not allow any exercise the day before, no gum chewing the day of, and involves relaxing in a dark room for 45 minutes after being injected with a radioactive glucose solution.

I came home on Thursday and on Friday morning I received an e-mail from oncologist. She already had my head CT and my PET scan results.
There was nothing on the head CT to explain what is going on with my tongue. So after talking to my surgeon and radiation oncologist my oncologist put in a request for a head MRI.
The PET scan showed 2 areas of activity, the right lymph node and my right 6th rib. Neither was a surprise as the lymph node has been thoroughly inspected and I have been having random pain in the area of that rib for the last month or so that I figured was probably a met that was acting up.

I saw my oncologist in person a few days ago, after being seen by a resident. Since my case is nice and complicated any resident interested in breast cancer gets to see me so it turned into a long, tiring appointment. The decision for treatment is to continue to follow an aggressive path. This means my oncologist is recommending lymph node removal and mastectomy for the right side (yay! I really want the right breast off, the imbalance drives me completely insane and it is my only regret in all my treatment decisions that I didn't have the right mastectomy done at the same time as the left.) I would then have radiation to the right armpit and to the 6th rib. The radiation to the rib should stop cancer growth there and reduce the pain.
I also requested at that appointment to switch from the clodronate pills for my bones to an iv drug. Having to wait an hour to eat after taking the pills in the morning drives me crazy these days and I am ready for a change. My onc decided to put me on something that is a monthly injection. I asked if that would be at the cancer agency because having to go to a walk-in for my zoladex injection is a total pain in the ass. She had a little hissy fit at me for not telling her that my zoladex was being done elsewhere and she said she would get it reinstated at the cancer agency for me in time for my March injection. The bone drug injection would also be at the cancer agency. Yippee! So much easier.

I had a few hours to kill post appointment so I spent some time with some old friends at the Jubilee lab. It is nice knowing people in so many hospitals :-)
Then it was time for my head MRI (yes, already. I think this tongue thing of mine has really freaked people out. It is extremely disturbing how fast I am getting in for tests). This MRI was much better than the last MRI even though it was the classic type of MRI machine that is the long narrow tube.  Fortunately I have absolutely no problems with claustrophobia. I got to lie on my back which is more comfortable and I got earplugs that had the music piped in. Way better for blocking the sound of the machine!!! Good thing too since there were more sets of pictures and they all took longer. It seemed like about 10 sets and each set took between 3 and 5 minutes.
Finally with the pictures all acceptable I got to escape the medical facility. I ended up picking up Ian from and we met my parents for some sushi. An excellent way to end the day.

Since then I have visited with some relatives and watched the Super Bowl. No comment about that other than, it was 1 yard!!!!! What on earth made you think throwing the ball was a good idea??!?!?

So, a quick recap, node, bump, and rib are all cancerous, some of which is ER negative and I am waiting for dates for lymph node removal, mastectomy, and radiation.

Congratulations if you made it all the way thru this long, convoluted post. Have a drink.