Crappy update

i ended up in the cancer triage yesterday because of increased shortness of breath and a distended belly. they thought that maybe i had fluid buildup in the belly because of my liver but they didn't find fluid there. they did find fluid in one of my lungs so they are making an appointment for me to possibly have the fluid drained.

the doctor i saw gave me the results of the latest scans and it appears that the current treatment isn't working and the cancer is progressing in my lungs, lower spine and liver. also they found two lesions on the brain that appear to be cancer.

i suspect i will now go back on taxotere, the iv chemo i had last time. i had really good results last time so i'm hoping it will do the same this time.

no news from the ortho specialist. i might just say to hell with it and just live with a baby finger that won't bend.

what i'm grateful for today: that my mom is here to help me and she doesn't complain about all of the hours spent at the hospital having tests and waiting, waiting, waiting.

Debbie Downer visits the oncologist

I had an oncology visit today but I cheated and got my CT scan results from medical records 2 days ago. I wanted a copy of the report so I’d know what questions to ask.

The short of it is that the cancer is continuing to progress and there are now mets in my liver. The LC (lymphangitic carcinomatosa) has grown and spread further into the lungs.

The good news is that there are no mets to the brain. The bad news is that the brain scan shows an aneurysm. (As if I don’t have ENOUGH going on already!) Dr G says that, although it’s not related to the cancer, the best way to deal with it is probably to radiate it.

Because the scans were done as a baseline around the time I started the Xeloda, my onc wants to continue for another round or two to have something to compare to. I’m not in a hurry to go back to IV chemo so I’m going to hang in there and give the Xeloda a chance to work.

What I'm grateful for today: I had so many offers from people to go with me today that I could have had my own entourage. I suspect they discourage group appointments, so thank you to Anka for coming with me and representing my 'peeps'.

Blah, blah, blah

According to my CT scan, I have lymphangitic carcinomatosa. Don’t bother googling it; it just says things like: “poor prognosis”, “fast progressing” and “short survival time”. As Daria would say "blah, blah blah".

I talked to my oncologist last night and he said that it’s not good news but not to panic yet (easy for him to say!). He asked that I give them a chance to try and get it under control and that if the Xeloda doesn’t work, they can add Taxotere (I had good results with that for the tumors in my lungs a few years ago).

I’m trying my best to take his advice. After all, what choice do I have?

When I started this blog, I wrote this on my profile: “While it may be necessary to go to the 'dark side' at times, I want to create a blog that is about living in the moment and finding joy in the small things.”

It was so much easier to live in the moment and find joy in the small things when I didn’t have actual symptoms from the cancer.

I guess this is the ‘dark side’.

A shit-storm of bad news

On the tail of losing friends Meridy and Mary in a few short weeks, I received the news on Friday that I was dreading about my lost voice. It turns out that it is cancer related after all.

There is cancer in the lower trachea and the bronchus leading to both lungs. My understanding is that the cancer is pinching on the nerves that go to my larynx, which is why I have lost my voice. The plan is to start on Xeloda, an oral chemotherapy drug, on Monday.

What I’m grateful for today: Anka, for listening and letting me cry on her shoulder this weekend.

The good, the bad and the ugly

The good: I had a chest x-ray this morning and nothing showed up in my lungs. We'll have another look in about 6 weeks with a CT scan. Also, Dr C recommends putting off radiating the lesions on my spine until I have symptoms.

The bad: I still don’t know what is causing this horrible cough. I missed a message from the nurse saying that Dr G had prescribed Decadron (a steroid) and another drug (not sure what), but I was too late to call back, so I’ll have to wait until after the long weekend to get the prescription. I’m not in a hurry to go on Decadron anyway because it makes me manic and puffy, but I need some relief from this chronic cough after 5 months.

The ugly: I also had an x-ray of the rib that has been causing me pain and it appears that there is cancer there. So the plan is to do 10 radiation treatments to the rib in the next few weeks.

Mom and I had quite the morning at the zoo (aka the cancer clinic) so one of Anka’s magic pedicures was just what I needed this afternoon.

What I’m grateful for today: pampered feet. Heh, I might glow in the dark, but my feet look good!

Happy Mother's Day to me!

The good news is: Adam has finally arrived! We went out for Indian food to celebrate Mother’s Day and I’m enjoying catching up and just hanging out with him. I’m so happy that his life is going well (he just got offered a full-time job at Shell) and amazed that I somehow managed to produce such a nice and impressive son.

The bad news is: I had to tell him that there is cancer on my spine and that I’ll have to have radiation treatments. One of the worst things about having metastatic cancer is having to tell my family bad news. I’m realistic and getting used to the ups and downs, but it’s always a blow to Adam and my mom when there is a change for the worse.

I see my medical oncologist this week and the radiation specialist next week. In the meantime, I’m just going to enjoy every minute I get to spend with Adam.

What were you doing at 5 a.m.?

It’s 4:45 a.m. and the halls of the Ottawa General Hospital are empty. I follow the signs past L, M, N and O, to the MRI area on the second floor.

There’s no one at the reception desk with I arrive. There is a manual bell, just like the ones that teachers had on their desk when I was a kid, and a sign that says to “please ring only once”. I do and a woman appears behind the glass window at the counter. She tells me to put on a gown in one of the cubicles and lock my things in a locker.

I wait in my gown in an old vinyl reclining chair set on it’s own in the hallway. I can’t read because the lighting is poor, so I put the chair in the reclining position and try to relax. After about 15 minutes I get up and get another gown, which I wear like a housecoat, because it’s cold in the hallway. I haven’t seen another soul since the receptionist, but I can hear the roar and clank of the MRI machine coming from behind the doorway marked with a huge caution sign.

Finally another woman in a hospital gown comes out of the room and we exchange awkward smiles as she passes by. It’s my turn now and the woman I thought was the receptionist must be doing double duty because she is now the technician that is doing my test. She helps me lay face-up on the long tray-like table with a pillow beneath my knees, and she gives me ear protectors that look like huge stereo headphones.

This is my third MRI and I remember the feeling of claustrophobia from my previous experiences. So I ask for a cloth to put over my eyes so that I can trick my brain into not acknowledging that I’m in a long tube that feels to be just inches from my face. I’m clutching a rubber bulb attached to a tube that I can squeeze if I panic. I wonder just how long it would take for the tray to pull out of the cylinder if I squeeze the bulb. Would an alarm sound? Can I trust that the technician would respond quickly enough before I bump my head and injure myself trying to get out?

I try to practice my yoga breathing and meditation while the tray moves my body slowly within the cylinder, but it’s hard not to picture myself as being trapped in the trunk of a small car in a manufacturing plant, being moved along a noisy assembly line. The technician asks me a few times if I’m doing OK through a speaker in my headphones but, unlike during my first two MRIs, I don’t get the sense that she really cares about the answer.

I suddenly realize that I have no idea what area of my body is being tested. My spine? My lungs? My brain? All of the above? I’m tempted to peak out from beneath the cloth covering my eyes to see where I’m at in the tube, but I’m afraid, and I wouldn’t be able to get my hand up to lift it off anyway.

Finally it’s over. Has it been 15 minutes or 2 hours? I’ve lost all sense of time in the machine. The tray moves out of the tube and, before I know it, I'm dressed and walking down the empty halls and out the front door of the hospital, to find that darkness has turned to light while I’ve been in the building.

I’m grateful that it’s still early enough that the morning traffic hasn’t really started and I’m home before I know it, back in my bed, curled up with my dog, for an extra hour of sleep before I start my day.

Status quo

I had blood work done through my port at 8:30 this morning and then had to go back again at 11:00 to see the oncologist. The good news is that there’s no change. The bad news is that there’s no change.

I would have liked to hear that the remaining spot (tumor? parasite lesion?) is gone, but I am happy that things are stable and nothing new has popped up. That means I go ahead with my Faslodex injection tomorrow morning as planned.

I was going to go to An Evening in Research at the cancer clinic tomorrow night but decided that the whole cancer thing can be such a bore. So I'm going to the Photography on Skis course put on by the Ammas for Grammas instead. We’re going to get instruction and then head out on our cross-country skis at dusk to take pictures.

What I’m grateful for today: That the annoying cough I’ve had for 2 months is just an annoying cough.

The prodigal son returns in: 67 days

True confession

I'm embarrassed to admit it... but I had marshmallow fluff on toast for dinner tonight. The marshmallow fluff was an impulse buy during a quick run to the store for milk.

I think I’m just feeling unsettled because I see the oncologist tomorrow. A little over a year ago there were more spots on my lungs than they could count. Three CT scans ago there were no spots. Two scans ago there were two. My last scan showed that one had disappeared and I was down to one.

It feels like I’m riding a CT scan result roller coaster. I’m one tumor away from either being declared NED (no evidence of disease) or starting chemo again. I’m trying not to live from one set of results to the next, but I must admit that today I’m feeling a bit anxious. That probably explains the marshmallow fluff.

What I’m grateful for today: An unexpected ‘chat’ via Facebook with Adam this afternoon. We were both logged on at the same time so we texted back & forth about everything from Canada’s Olympic hockey win to tomorrow’s appointment.

The prodigal son returns in: 68 days

Thufferin Thuccotash

There are a gazillion blogs out there written by people with cancer (and I thought I was the only one!), so many in fact that I can only manage to read a few on a regular basis. One of my favorities is called Thufferin Thuccotash - Laughting and Suffering. While the posts usually make me laugh, there is almost always something I can relate to in a serious and real way.

Here are a few lines from a recent post about the author's thoughts while waiting for x-ray results.

"I thought of the worst case scenario and how I might react? Surgery, chemo, bald, thin. Lord knows I've been on worse diets! I remember my reaction the first time I was diagnosed with cancer. I was hysterical, phoning everyone I knew, and then I started at the beginning of the phone book with people I didn't know. It was all about me! I panicked. I cried. I planned my funeral and thought of songs I wanted them to play. You know that song from the movie Platoon - Adagio for Strings, opus 11? Gah..that's such a moving song, perfect for my rainy afternoon funeral in March, a few days after my birthday where I turned 51 years old and so cute still!! The songs I chose would make me cry and then I'd get depressed. I was gnashing my teeth (what few I have left), back of my hand to my forehead. I picked out a lovely coffin, even wrote my guest list on a post-it note. Had chemo, went bald and survived (so far).

Now I sometimes feel guilty that people who grieved with me initially are annoyed that I dragged them into an emotional frenzy yet I didn't die. I mean, all that drama for nothing (or for, what now feels like, nothing in the scheme)."

What I'm grateful for today: All of the amazing, honest, crazy, ballsy, funny and inspiring women so willing to share their heart and souls with all of the other amazing, honest, crazy, ballsy, funny and inspiring women out there who need to know they are not alone.

Test results

The news from my oncology visit on Friday wasn’t great. There are two new ‘nodules’ (aka tumors) on my lungs; I believe he said there was one on each of the bottom lobes (but to be honest, I'm a little fuzzy).

The good news is that we’re not rushing back into chemo. I have no symptoms (coughing, shortness of breath) so my onc suggested we wait a few months and have another scan to see how aggressively (or hopefully non-aggressively) the cancer is progressing.

While it’s disappointing, (OK, it sucks), it didn’t come as a huge shock. The doctor reminded me that this is a chronic illness that needs to be managed. A particular treatment will work for awhile and then things will ‘flair up’, which indicates the need to consider a new drug.

The worst part is having to tell my family when the news isn't good. I talked to my sister and mom yesterday, and I just got off the phone with Adam in Holland. That's the part that makes me want to scream!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Note to self: Don’t get test results on Friday the 13th again

No apologies for the dark cartoon; it's my way of coping. I'm picturing myself as the person in the mask, not the chicken.


Anka dropped off some homemade soup and rice pudding so I'm going to go self-medicate with food.

CT Scan Results

I had my oncology appointment today and wasn’t surprised that the news from my last CT scan (June) was good. I figured that, if not, they would have called me by now. It’s likely that I will need radiation on the nodes in my chest wall at some point, but they are currently stable. For now at least, the treatment (Faslodex) seems to be keeping the cancer under control.

I once heard a speaker say that cancer is directly linked to stress and usually appears about 2 years after a traumatic event in your life. It made me retrace my steps and think about what was happening at that time. Two years before my original diagnosis, I went through a painful breakup with someone that I thought I would spend my life with. Two years before it returned, I was in an impossibly stressful situation in my work life.

Coincidence? I’m not sure. But what I do know is that the current stress-free life I'm living has been great for my health. Here is a picture that Anne (secretly) took of Katey & me in the “Om tent” beside the gentle rapids at her cottage a few days ago.

Peace above me
Peace below me
Peace at my left
Peace at my right
Peace onto me
Peace in my surroundings
Peace in the universe

Good news!

I saw my oncologist and got the results of my CT scan today: nothing in the lungs, liver or bones! They will be watching 2 lymph nodes on my chest wall that are slightly larger than last time but, all in all, it’s excellent news.

I made an appointment to see the energy therapist in Nova Scotia that I saw last summer. Since then, the numerous tumors in my lungs have disappeared (they said there were too many to count). Was it the energy therapy? The chemo? A combination of both? Who knows… but I’m planning to cover all the bases.