Riding a Roomba, or what a difference a week makes

My last post, a whopping 10 days ago, left off with my comments about the lymphedema in my right arm and how much it bothers me. Since then things have gotten a tad more adventurous.
The motion in my shoulder has been somewhat limited pretty much since all the swelling started back in March. When I mentioned the decreased mobility at an oncology appointment a little while ago one of the annoying substitutes I had said that isn't surprising because of the swelling so I didn't think much of it. Around the beginning if October I noticed that I could feel a bit of a tendon or something in my right armpit. That surprised me a bit as it made me think of something called cording that can happen after surgery. Cording is basically when the scar tissue builds up like a thick cord and can really impair mobility. Normally it shows up fairly soon after surgery so the fact that it was a year and a half later seemed a little odd.
Dealing with it requires physiotherapy so I decided I would ask about it at my next onc appointment and see what my oncologist says. She has likely felt cording before so can give me an idea if that is actually what it is.
A few days after that I got a funny kink in my neck on the right side the was a little painful but if I did this weird shoulder shrug and bend my head backwards for about 30 seconds it went away to not be thought of again. Until it happened again several days later. And then a few days after that, and then again, and again, until it was happening almost daily.
For time context, Thanksgiving weekend went by and time continued to pass. I posted my last blog and then about a day later I was doing a lymph drainage massage on my arm and I felt a little lumpy thing in my armpit next to the cordy thing I was feeling. Hmmmmmmm
At that point I figured I might as well do a breast exam since I hadn't had one for a month or so. Huh. Is that another lump?
At this point it is less than a week until my next onc appointment so I just did a general brain purge about it all and waited to see my onc and get my scan results. Until the weekend when I noticed some redness on the breast as well. Another hmmmm.
So on Tuesday, the 18th?, I went off to see my onc. The first thing she asked was how did I feel? My response was "um, good-ish, maybe. What do the scans say?"
The CT scan had been done Sept. 27th and the brain MRI Oct. 2nd so both before I had felt any lumps. The MRI remains stable and the CT mentioned some vague something or other that may or may not be anything. So nothing leaping out screaming "look at me!!"
So, I said "well, physically I feel good, the Bell's symptoms are still random and I think there may be slight signs of improvement in my hearing, but..... well I found some lumpy things."
Time for the physical exam. I said that I could only find the armpit lumps (did I mention I could now feel 2?) when I was lying down. My onc asked about the redness, and I told her I had seen it a few days ago.
Onc: "And what about the bumps?"
Me: "What bumps?" Looks down. "Oh. Those bumps. Um, didn't notice those bumps before."

So.......based on my experience at my original diagnosis, I would say that the lumps and bumps are signs of progression. The bumps are a sign of the cancer infiltrating the skin.
My oncologist agreed and said that she would book me for a mammogram and MRI to see what exactly is going on. The cording in my armpit may not actually be cording and may be a result of the cancer. She also asked if I was okay with biopsies if necessary. Yes, for sure. These sites are easy to biopsy so confirming any markers just makes sense to me.
I have already done the Estrogen receptor switch so I would like to confirm the Her2 status again. If I am switching treatments I'd prefer I switch to something that should theoretically work.
The tentative plan is moving from Herceptin and Pertuzumab to TDM-1. TDM-1 was approved for use in September 2012 so after I was originally diagnosed. It is a chemo molecule bound to a Herceptin molecule. The idea is that the Herceptin binds to the Her2 protein within the tumour dragging the chemo molecule with it. The chemo molecule then does its chemo thing within the tumour rather than on just any fast growing cell throughout my entire body. This lessens the wide spread side effects seen with a general chemo but doesn't necessarily prevent them completely. So my white cell count can still decrease and I may lose my hair or I may not or I might just get thinning.
And this is where the Roomba comes in. On my way home I started thinking about a good analogy for what the next 3 weeks until my next oncology appointment would be like. The first thing that popped into my head was the post I saw on Facebook a while ago about the incident of the Roomba in the night time. Or should I say the Roomba and the dog poo.
This post pretty much reconfirmed for me, as a pet owner, why I don't have a Roomba (if anyone doesn't know, a Roomba is a little vacuum that you program and it vacuums your house for you. Most people set them to do the vacuuming in the middle of the night or while they are at work so it doesn't disturb them.)
The guy's post went on to explain how he got up in the middle of the night one night and could smell dog poo. He went into the living room and found a dog shit disaster. Some time after he went to bed and before the Roomba did it's nightly clean, the dog had pooed in the living room. The result was dog shit everywhere. And I do mean everywhere. Apparently while the wheels on the Roomba are great as they enable the Roomba to run on practically any carpet the wheels are stunningly capable at picking up and smearing dog poo everywhere the Roomba goes.
There was mention of an area rug, and this part I actually thought was pretty cute. The guy said that his wife really loved the rug and he knew as soon as he saw the rug there was no way it could be cleaned and had to be thrown out. But, he knew that if he just threw it out his wife would ask him if he had at least tried cleaning it. So, since she loved the rug and he loved her he even tried to clean the rug before he threw it out.
While this particular incident seemed extreme, it was the first thing I thought of while thinking of the next 3 weeks. From there my mind jumped to the videos posted on the internet of cats riding Roombas. In particular the orange cat with the red cape. (How is the internet like ancient Egypt? It's where we write on walls and worship cats.)
So I decided I was like the orange cat with the red cape riding around on an unprogrammed Roomba so I never knew when I would run into a wall or know quite where I would have to go next.
On Thursday morning MRI booking called me and I got my appointment for Friday morning. That afternoon I was called again and I got an appointment in breast imaging for even earlier Friday morning. At least it was all scheduled for Vic General so I didn't have to travel around.
Friday morning at 7:45 I was in the mammogram waiting room. Turns out Friday (Oct. 21) is National Mammogram Day so if you haven't had a mammogram recently you should book one.
I was in the room with an older lady who had been cancer for free for 7 years. In September she was in hospital with fluid on her lungs, her cancer had returned. She had her mammogram scheduled for that morning and that afternoon she was going to see her oncologist to get a treatment plan. We talked about our experiences with chemo and the chemo ward and being in hospital and laughed about some of the crazy stuff. A couple more women came into the waiting room and I suspect they thought we were crazy to be laughing about anything. Hopefully those women are lucky with their results and they won't have their own chemo stories in a few years.
When I was getting my mammogram done I told the tech that I also had an MRI scheduled. She took my pictures and then did an ultrasound on me. After she discussed my case with the radiologist it was decided that I should go for my MRI then come back to get the biopsies done. There was a concern that any bleeding from the biopsies could interfere with the MRI.
I had about half an hour until I had to check in for my MRI. Fortunately I was prepared and had brought a book, unfortunately I had to fast for the MRI so no coffee while I waited. When I checked in for the MRI I was told they were slightly behind as a machine was down at the Jubilee so they were trying to fit in some emergency scans.
I ended up not being be delayed much, maybe 15 minutes. It was a breast MRI instead of brain MRI so a little different from usual. I was face down instead of face up and I went into the scanner feet first instead of head first. The scanner was still really loud. Definitely the worst part of the experience.
Once I was done with the MRI it was back to the breast imaging area for the biopsies. I saw my tech and she said the radiologist wanted to see the MRI pictures before doing the biopsies just in case they showed something she hadn't seen on the mammogram and ultrasound.
Fine by me as I needed to add money to my parking and it meant I could get something to eat. After caffeine and a muffin it was back to breast imaging again. I was getting tired of following the pink line by that point.
Getting the biopsies done reminded me of my original diagnosis. That time the radiologist was wearing open toed shoes (definitely something to be frowned upon) and 2 days later I was trying my best to not pass out standing in the customs line at the Vancouver airport as I was heading off to Rochester, NY for training in my new job.
This time it much less eventful. My radiologist was wearing running shoes and it is now 2 days later and I'm sitting on my couch drinking coffee. No travel plans booked.
Now I twiddle my thumbs and maybe ride around on the slightly more programmed Roomba, I feel like I shouldn't be running into any walls for a few days at least. My onc appointment is Nov. 7th. That means treatment change just in time for my birthday :-P

On a slightly different note, who can believe the Canucks are 4-0-1 to start the season???? EA sports is predicting the Canucks will finish the season last in the NHL with 63 points. Unless a lot of points come in overtime or shootout losses that could make for a long, depressing season. Since EA also predicted Nashville will win the cup, I sure hope the predictions are horribly wrong this year, even if I do like P.K. Subban.

Happy Metastatic Breast Cancer Awareness Day

Or something. In this month of 'Pinktober' of breast cancer awareness, the US created an official day just for Mets patients, Oct. 13th. The best day will definitely be when it falls on a Friday >.<
It has been a busy week with Thanksgiving on Monday, International Day of the Girl on Tuesday, Coming Out Day on Wednesday, and now Mets Day. Most people that will read this post already know me and what a Metastatic diagnosis means, but this is an awareness day so too bad for you, it is refresher time......

One in 9 women will experience some form of breast cancer. At the the time of diagnosis between 6 and 10% will be stage IV which means the cancer has already spread beyond the breast or neighbouring lymph nodes and has metastasised to the bones, lungs, liver, or brain. In my case the cancer was in my liver and in several spots on my bones.

A short mention of the difference between stage IV and Metastatic cancer......the stage of a cancer at initial diagnosis is the official stage of a cancer. No matter what happens in the future this does not change. A patient may initially be diagnosed as stage II and 12 years later the cancer may be found in the bones. This patient is a stage II patient with bone metastases or Metastatic Breast Cancer, she does not become a stage IV patient. A stage IV patient has Metastatic Breast Cancer from the get go. These terms are used interchangeably by most people but I find the difference quite significant as the mentality that drives each patient is quite different.
The difference is not so much caused by the patients themselves but by the way society views the patients. Society likes good news stories about fighters with happy endings. I know I much prefer happy endings, but as of right now with the state of cancer research an MBC patient never has a happy ending. As a result, society prefers to focus on the early stage patients that can be cured and be labelled a survivor. Us Metsters aren't survivors, we are surviving. Some within the Mets community use the terms Metavivor, others use Lifer. A few other terms get tossed around but those two seem to be the most common. Personally, I am more of a Cancer Coper. I cope with cancer, run around to appointments, get annoyed by the fatigue, and then get on with my life. The cancer may always be there but that is not all I am and I try my best to not have it run my life, although it kind of does. It is difficult for anything that required 50 appointments from January to the beginning of July to not control your life :-P

And done with running off on a tangent.

Of the 90 to 94% of breast cancer patients diagnosed at an earlier stage it is estimated that about 30% will eventually be diagnosed with metastatic breast cancer. The stage of the original cancer does not seem to be an indicator of the possibility of later being diagnosed with MBC.
It is estimated that about 150,000 women and men currently have MBC in the United States. Men can get breast cancer and it can also metastisise. Extrapolating that number down, there are approximately 15,000 MBC patients in Canada.
Only about 3 to 5% of research dollars are spent on all metastatic cancers yet for breast cancer only the metastatic form of the disease kills. Canada and Europe are around 5%, the US around 3%. MBC patients do benefit from a portion of the dollars spent on other aspects of breast cancer such as new drug treatments but perhaps better understanding how cancer metastisises would be helpful in stopping metastases from happening at all.
Having metastatic breast cancer also means that treatment never ends. I take a pill every day, get my Herceptin and Pertuzumab infusions every 3 weeks, my zoladex injection every 4 weeks, and my Pamidronate infusion every 4 weeks. And that happens every month of every year for as long as they all work and keep the cancer in check. As one drug fails it will be stopped and a new one will be added but there is no end to the drugs until I run out of drugs. Hopefully the researchers will keep finding new drugs.

Okey doke, I think that is enough education for one day, now a quick run down on how I am doing. I had conflicting scans in April, CT and MRI scans were lovely and showed stability in some spots and improvement in others while the PET scan was terrible and showed all kinds of progression. Repeat scans were done at the end of July then Ian and I popped over to Toronto and visit my cute little nephew.
We had a side trip down to a lovely place, Skaneateles, New York, to visit Ian's eldest sister and her family. So much good food, gotta love a place with a bakery that pumps out fresh donuts all day long. It is right on Skaneateles Lake, one of the cleanest lakes in the US, which seems so odd when it is only about half an hour from Syracuse, home of one of the most polluted lakes in the US.

Downtown Skaneateles from the lake

Downtown is only a couple of blocks long. Skaneateles itself is a village of only about 3000 people. The population increases to about 7000 in the summer when people return to their places on the lake.

Back in Victoria I got my scan results. Conflicting results again. CT and MRI scans were good again but the PET again showed all kinds of badness. That means more scans sooner so at the end of September I had another CT and MRI. I see my oncologist on Tuesday so I should get the results then.

Overall I feel about the same as always. I get a fatigue when I do too much and I have my Bell's palsy symptoms but they are good one day, less good the next, maybe good again, then really bad. They don't seem to change much. I still also have lymphedema in my left hand and upper right arm. I really need to go to a massage therapist to get some proper lymph drainage done to get it resolved but I am not super excited about adding more appointments to the already crazy mix.

That is it for now. Time to get ready for the storms that are supposed to be hitting us soon.

Go Jays!!