Friday, February 17, 2017

never a dull moment: the blood clot edition

On Monday, I got a call from the nurse who works with my oncologist. I had a CT scan last week, so the phone call made me I brace myself for the worst kind of news.

Instead, she said "You have a blood clot on your lung."

What unfolded next is a bit blurry but I know that I asked if there was cancer on the CT (no), whether this was life-threatening ("absolutely not") and what I should do next.

I was instructed to get myself to a specific ER (at the General Campus of the Ottawa Hospital, which also houses the Cancer Centre). They would be told to expect me. Tim and I gathered up our stuff, made sure Daniel would be OK and headed out the door. We were at the hospital in 20 minutes.

We then proceeded to wait for more than 6 hours to be seen by a doctor. I established that there was a note on my file, saying that I was coming in but that didn't seem to make a difference in my waiting time. When I finally saw a nurse, she told me that they didn't have a bed for me (I didn't think I was waiting for one) but that she would do a blood draw and they would give me a "loading dose" of the blood thinner that would attack the clot.

She also gave me Benadryl because I had an allergic reaction to the bracelet they'd put on me to alert everyone to my allergy to sulfa drugs.

I probably spent 5 minutes with a doctor. I was given a shot, sent home and told to expect a call from the Thrombosis Clinic in the morning.

We were at emerg for a total 7 hours, into the very early morning.

At 7:30am, I got the expected call from the thrombosis clinic. I was on the list for the morning but should come in "as quickly as possible" because they were "very busy."

This time I was smart enough to have a shower, something to eat and grab a coffee before going.

They were great at the Thrombosis Clinic. Everyone I dealt with was kind, patient, competent and had great communication skills. I learned that blood clots are very common in cancer patients ("It's our largest group of customers") and that my odds of anything bad coming from it went way down when I got the first dose of blood thinner.

I have been prescribed an injectable blood thinner (fewer side effects), that I am to administer daily for at least the next several months. I need to be careful about bruising and cutting myself because my blood will, of course, not clot very easily.

I'm already covered in bruises and have very thin skin (literally, not figuratively) from the Decadron. My stomach is several shades of purple and green at the injection sites (the one from the loading dose is huge and spectacular). I scraped myself on something on Tuesday evening  (I'm really not sure what) and I had to put pressure for a long time for the bleeding to stop.

But I'm already feeling better. And I know that my recent shortness of breath was caused by the clot, not cancer.

I learned that my oncologist spoke to the ER doctor on Monday night and had agreed that I would be streamlined through the process, given my shot and sent home quickly. Somehow that message didn't trickle down to the front lines. My oncologist was shocked and outraged.

I could  have been saved several hours.

Also noted: I was out of the Thrombosis Clinic in two hours; it was clean and had natural light and no one in the waiting room was hacking, bleeding or puking. They set me up to expect a long day but, relatively speaking, it really wasn't. There's a lesson in there about setting low expectations.

I still don't seem to be able to do that.

And even as I was going through this, I was very aware of the fact (and appreciative of it) that I was not going to be handed a bill at the end of the process.

Wednesday, November 30, 2016

progress and next steps

I had an MRI a couple of weeks ago and got the results last week. There has been slight progression in all three tumours in the brain.

That's the bad news.

The good news is that there are no new tumours and that my spine and cerebrospinal fluid remain clear, with no detectable cancer. This means that the Herceptin must be doing something for things to be progressing relatively slowly.

We just have to figure out how to make it better at its job.

There is very little research, when it comes to leptomeningeal disease (or leptomeningeal carcinomatosis), so in lots of ways we are making things up as we go along. The first thing we are going to do is increase the dose of Herceptin and to try and slow the drug down as it enters my brain.

At tomorrow's treatment, we are going to increase the dosage from 60mg to 80mg. The Ommaya Reservoir only holds 60mg and at the end of treatment, the oncologist usually empties it by pumping (really just pressing down on it a few times). Tomorrow, once it is empty, he will add another 20mg and let it drip down over time into the brain.

The next step (we have not determined when) will be to add methotrexate. Herceptin has been shown to be more effective when used in concert with a chemotherapy drug and methotrexate has been shown to be safe for intrathecal treatment (directly into the brain, either through the Ommaya Reservoir or a lumbar puncture).

You may have noted my use of the word "we". More than at any stage of treatment, this process has been incredibly consultative. My oncologist (and the one who replaced him when he was away) has discussed every option with us (Tim and me) and encouraged us to do our own research and bring it in. Since there is just not that much out there, we are trying to find what we can.

We've also discussed safety, liability (for everyone) and quality of life. At this point, I am not willing to go in more than once a week (or to feel sick all the time) nor am I willing to do things that are only in the initial phases of safety or as Dr. G put it "could fry your brain." These desires dovetail nicely with the hospital's and and my doctors', so we are not in a battle about resources.

Hopefully, more things will be available, once we have tried these next steps. When I am sad about how much life has changed for me, I remember that these last few months have been a sort of gift. As my oncologist says, I am "not supposed to be here."

I'm mostly comfortable sitting in this place. I live in this body, so I am not surprised by this news. I want to stick around as long as I can but I also want this time to be happy. It's a delicate balance.




Sunday, November 13, 2016

every week. in pictures.

I have now had 24 treatments of Intrathecal Herceptin. A few weeks ago, my friend Karin came and took photos. They were for me (because I can't see my own head) and they helped me a lot to understand the process. It's occurred to me that some of you might like to see them too. 



Every week, I am placed in a private room. It's been the same room every time and I have come to think of it as mine. I get the usual "pre-meds" of intravenous Gravol (dramamine) and Demerol (meperidine) that I have had for years with Herceptin to keep from having a reaction

My oncologist (only doctors are trained to deal with the Ommaya Reservoir), comes in after the meds have kicked in. This is what it looks like before treatment (after my hair is combed out of the way).





Dr. G shaves the Ommaya to sterilize it.






Iodine is the next step in sterilization. Rubbing alcohol comes after.
  




We joke around and laugh a lot at the beginning of every appointment. I look forward to that
part. The atmosphere turns very business-like during the actual treatment. I appreciate that, too.






Before treatment, a sterile cover is put on my head, with a convenient hole in it.





The needle is injected in the Ommaya. It doesn't hurt. Really (remember, that's iodine. I am not bleeding).





Before anything can be inserted, brain fluid must be extracted. This, to me, is the really freaky part.



I will be getting 60 mg of Herceptin, which is about 30 ml (about 1 fluid ounce), so that amount of cerebrospinal fluid is what is taken out of my brain. It will be sent for testing, to see if there are detectable cancer cells. It’s a good sign that the fluid is clear and so far the tests have been negative.



Then the Herceptin goes in. As with the extraction of fluid, it's done over several minutes.


I am the first and only person to have this done in Ottawa, so sometimes I am asked if it's OK to have staff in to observe. I always agree to this.



When it's all over, the needle comes out.




And we are done.






The oncologist leaves and there is a 30 minute observation period. The nurses “take my vitals” after 15 minutes and at the end of the half hour. Then I can go home (except every 4th week, when I stay an additional 90 minutes for the intravenous infusion of Herceptin).

This week, I have a spinal MRI and the following week one of my brain. 

I hope treatment is working.

(Photo credits: Karin Jordan)

Sunday, October 16, 2016

i learned something from this one

This article explains why some of us get so annoyed when cancer "awareness" campaigns focus on saving the "girls" or the "tatas" or - well you know what I mean.

Lots of food for thought here and I learned some things about cisgender privilege and breast cancer.

From "Every day feminism, It's a longish read but very well done.

"4 Ways Breast Cancer Awareness Campaigns Can Be Sexist and Oppressive"

Saturday, October 15, 2016

time is running out


This is one of the very best and most powerful adds I have seen on breast cancer. And that is saying something.

It's about living with metastatic breast cancer, less than 3 minutes long and very, very worth it.

Friday, October 14, 2016

update: stable

I have now had 17 intrathecal (injected into my brain) treatments of the Herceptin. I'm getting used to it.

I had an brain MRI on September 15.

It showed all visible tumours to be stable. There were no new visible tumours. As I said, in an email to family:
"The brain MRI shows things to be stable. This is so much better than the alternative that we celebrated with gelato and a meal out.

It would have been nice to see some progress but this is still good. What's difficult to know is if I am just staying stable right now on my own or if the treatment is working. What is certain is that we will not be stopping for a little while - even if it is a grind, we have to assume that it's helping. Things are certainly not nearly as bad after 14 treatments as they could be by now."
The oncologist treating me said that it's likely that I am stable because of some treatment but we don't know if that's the Herceptin or the CyberKnife radiation I had in March. I do wish it were more obvious but I am happy to be here and to be feeling OK, all things considered.

I also had a spinal MRI on September 16. The report clearly stated that there was no visible sign of metastasis in my spine. This is good news. I'm still in a lot of pain but I don't need to worry that its caused by a new tumour.
"I have degenerative disc disease (which is a misnomer because it is not a disease and not bound to get worse). I will not hurt it by walking through pain or swimming. I'm going to see a physiotherapist and I have acquired a stability ball. My back pain has been a serious impediment to my quality of life so I want to make it better."
I also have neuropathy in my right foot and a lot of discomfort from headaches and all the weight I have gained. I miss my old body and the things it could do. I haven't given up hope that I will get some of that back but it's frustrating. 

On the other hand, I feel lighter these days. I spent much of the summer feeling like I was about to die and just waiting for the other shoe to drop. Nothing has changed really except that I seem to have decided to enjoy living. It's so much easier to exist this way.

At one of my treatments this summer, Tim said to me "I feel an obligation to have more fun." It's an odd way to put things but I really got it. We have, since that day, put in a concerted effort to have a better time. And I think we've been doing a pretty good job.