stable and unremarkable. my new favourite words.

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.

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)

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.

grieving and treatment

My father passed away a couple of weeks ago (the night before I started IT Herceptin, in fact). His service was last week. It was small and private. I was very impressed with the priest who had never met my father but listened to my mom and my sister and said some very thoughtful things.

The end of my father's life was not an easy one and, in his last days, I was unable to get to the hospital. I didn't (we didn't) want to put my treatment in jeopardy by exposing myself to hospital germs. 

It was the right call but it was hard and it made everything seem less real and further away. 

I have realized that grieving, or working through, a death is perhaps not so compatible with intense cancer treatment. I need to stay focused, informed, strong and clear as we go forward.

I need to keep putting one foot in front of the other and get to treatment every single week. I need to build a relationship with a new oncologist (who I had never met before starting the IT Herceptin). I need to figure out what I wish to do when it comes to increasing doses and deciding how to proceed (my new oncologist is very thoughtful but also consultative. He acknowledges that we are smart and well informed - and that there is a paucity of information out there). 

I need to walk that line between getting stuff done, having some fun, staying vigilant and getting enough rest.

It turns out that my regular oncologist, who has followed me since 2006, is unlikely to return for several months (I do not know the details as to why and don't feel that I am entitled to them. Something very hard must have happened and I hope that he is getting what he needs). What I didn't realize is that the other doctor, who convinced my oncologist to go the route of IT Herceptin, is finished at our hospital and is now in Boston. At least he is reachable via email by my medical staff but he's not here to question and to reassure.

All that to say that I want to grieve. I want to hold up my emotions to the light and and think about what this recent loss means. I don't cry easily and it has yet to really happen.

The service helped. And I have been thinking of the things that were important to my father that he passed on to me: intellect, honesty, respect for privacy, a love of literature and a curiosity about the world and it's differences. 

And despite all that he went through at the end, I know that he would want me to keep putting one foot in front of the other.

Two of my boys out for our meal after the service.

onward

There was a bit of a rocky start but I seem to be moving forward with treatment. Every Wednesday, for the rest of the summer, I will be getting Herceptin, injected through my Ommaya Reservoir. I'm not the first in Ottawa to have an Ommaya but I am the first to have Herceptin injected in this fashion. I'm hoping hard that it's working.

There was some confusion on my first week. First I was told that treatment would be delayed by a day and administered by an oncologist other than Dr. G., who has treated me for for 10 years.

Then, on the day of treatment, I found out that Dr. N., his replacement, had thought I had been through this a few times and was taken aback that it was my first treatment. I also learned that it will be weeks before my own oncologist returns.

I want to be clear about the fact that there is no way that Dr. G. would disappear like this, unless it was a personal emergency. I am missing him like crazy and upset that he's gone but I believe that he had no choice and I am want things to be better for him soon.

That fact didn't stop me from freaking out a little.

Dr. N. was incredibly adept with the Ommaya and I really liked his manner. He was thoughtful, gentle and clear. He was unsure how we were going to proceed, given his own schedule and that of other staff. However, when I said "It's disconcerting, when you've been told that you might only have months to live, to learn that there is no plan for treatment for the next several weeks."

He left, got it sorted and came back with a schedule: I'm to be at the hospital every Wednesday morning until my MRI in August.

By my second appointment, things had become even clearer. Dr. N. had spoken to a third doctor who works with Dr. G., and who has worked on trials of this treatment and really supports it. He was getting married on the Saturday after my first treatment and was probably on his honeymoon during my second). Dr. N. knew the plan and had been reviewing the literature and was ready to share that with me.We will do the same dose for three weeks and then double it for 3 more weeks. 

After that? I don't know but knowing this much is very reassuring. Next week, yet another oncologist will administer the treatment. Like Dr. N, he is not a breast doctor but hopefully he knows his way around an Ommaya. 

I didn't react to the Herceptin either time. This is good but perhaps also bad, since I reacted before the Herceptin worked on the rest of my body.

I have to trust (and do my own research). I'm trying. What other choice do I have?

It's been a rough couple of weeks, for reasons unrelated to cancer. My father passed away the night before my first treatment. It was not entirely unexpected but it was still painful for everyone and something that I think we are all still processing.

Today is Canada Day in Ottawa. I'm not crazy about crowds and it is currently pouring. I am sitting on my couch as I type this. I think it's exactly where I need to be.

limbo and dreams (updated)

I am still in limbo. My head is healed and I feel more like myself, except for some odd symptoms (my jaw is still freezing shut intermittently for a minute or so. It's so annoying. And embarrassing. It's not really something I can hide and it happens at the most awkward times).

I had my surgery on May 9. Everything said to me leading up to that implied that moving ahead was urgent. And yet here we are. I have a lot of faith in my medical team but this time information is not forthcoming and it's making me crazy. I can't plan a thing and I would just like some kind of information. I know I haven't fallen through the cracks. I would just like someone to explain to me where things are at.

I like information. It makes me feel in control.

So don't ask me when I will be having treatment because I don't know.

On another note, I had some strange dreams last week.

I dreamed that the area in which I lived was being flooded and I had to rush back and get a few things before all was washed away. When I arrived at home, though, the rain stopped, the sun came out and there was a brilliant blue sky. I didn't have to leave after all.

In another dream, a small furry mammal was hit somehow and fell to the ground, dead. In my dream it was a "possum" but it looked more like a groundhog. The body lay in the same spot throughout the dream and I would check on it periodically to see if it was still there. The last time I looked before waking, the animal jumped to its feet and bolted up a tree. After several days of lying still, it wasn't dead at all.

Deconstruct that. No so hard.

Now let's get some news, so I can follow my dreams.

Update: I finally have dates. I don't start for a couple of weeks. I asked why and was told that my oncologist said that it's "not urgent". I asked if this was because of the decent MRI and the nurse said she thought so. After the first date in June, I will go in weekly for a few weeks and then I guess we will re-visit the schedule.

I feel mostly relieved because I can plan my life a little. I just wish I didn't have these annoying symptoms that remind me what's happening.

may you live in interesting times

It's been two weeks since my surgery and for some reason, I thought this would be the easy part. I don't really know why I thought that, except that both my surgeon a and my medical oncologist seemed to the think that putting the Ommaya in could have been like day surgery and I would be feeling like myself again in a week or so.

Not so much.

The nurses were much more cautious and they said to take it easy, be consistent in my activity and increase it very slowly. Ultimately, this is what makes sense. I just wish I weren't so damned impatient.

My surgery was on May 9th. I was in the recovery room for much longer than planned because there was no bed for me in the neurology ward. I ended up being moved in the middle of the night and sent home by noon the next day. And I was just kept in as long as that, so that I could get my three doses of IV antibiotics.

I had a good first couple of days at home (and it was such a relief to be there) but later in the week, after a fast taper on the Decadron (the steroid with which I have a hate-hate-like relationship), I started to notice that my eyes were getting swollen, as though the lids were filling with water. By Saturday afternoon, they were swollen to slits.

They got worse.

No one told me this could happen.

The next day, Sunday, my eyes were starting to improve but my head was hurting. In the beginning, all the pain had been around my incision. By the following weekend, the top and back of my head hurt and it felt just like my brain was swelling. Or a new tumour was cutting off the flow of liquid. It hurt and was very, very scary.

I debated going to Emergency (I hate the ER but the stuff I was reading online pretty much said it could either be a nuisance or kill me) but in the end, decided to take it very easy and call my surgeon the next morning (Monday).

My doctor's secretary made me an appointment and had me come in. My surgeon ended being called away to an emergency and we spent 5 hours at the hospital. It was worth the wait. A CT scan showed that there was no bleed and no obvious new tumour. My doctor put me back on the steroids (a drag but good for the swelling), shared a pretty decent MRI with me and a very hopeful story of a patient with leptomeningeal disease who he knows and has treated, who is still alive and active, two years after her diagnosis.

I told him that I'm collecting hopeful stories.

I went home in a much better mood but woke up in the night with a killer urinary tract infection, my second in a month and almost definitely contracted at the hospital. I have finished my course of antibiotics to treat that and am trying to consume as much probiotic as I can, to avoid a resistance to antibiotics. 

It's totally a case of two steps forward, one step back. On Saturday I felt pretty good and .possibly overdid it. Today, my head hurts again and I am tired from the steroid induced insomnia. I'm also feeling irritable and impatient. I am not supposed to bend down or lift anything. And I hate having to ask for each thing that I need to be done for me.

Today is my regular Herceptin treatment. I still don't have a date for IT Herceptin

At least I'm sitting in the sunshine as I type this. I just need to chose to be in better mood.

Or not.

p.s.: This totally reads like writing on speed. The steroids make my heart pound and my fingers fly!

beating the blood brain barrier

Ouch! My writing muscle hurts! I realized this week that I have not blogged since March 23. I have so much I want to say that I don't know where to start, so it feels a little overwhelming. 

About 10 days ago, I had an Ommaya Reservoir, installed in my brain. Compared to my other brain surgeries it was a walk in the park but I'm still dealing with all kinds of fallout from the anesthetic, pain and healing. I had my staples out yesterday, though, so the end of the tunnel must be in sight (although my head hurts as I type this).

You can see my incision and the staples here. It's in a semi-circle at the front, slightly to the right.

The good news is that we have decided to try something that is still pretty experimental: injecting Herceptin (also called trastuzumab, to which I have been a super responder. I have been on the drug for 9.5 years and since since going into remission, have no detectable cancer below the neck) directly into my brain, thus getting past the issue of the blood-brain barrier. This is known as Intrathecal (or IT) Herceptin. There is currently a trial happening in Montreal (and a resident who works on it was just in Ottawa, working with my oncologist) and there are stories of people going through the process in the Western US. I will be the first in Ottawa. I'm told that everyone in the hospital is very excited.

By artwork by Patrick J. Lynch, Kuebi = Armin Kübelbeck - own work, the brain is taken from Image:Skull_and_brain_sagittal.svg made by Patrick L. Lynch. Made with InkScape., Public Domain,
https://commons.wikimedia.org/w/index.php?curid=6066950

IT trastuzumab was effective in targeting extramedullary (LM) metastases. This resulted in the prolonged survival of our patient for 46 months, compared to a median life expectancy of 3–4 months for breast cancer patients following the diagnosis of LM without treatment [18]. Given that IV trastuzumab does not cross the blood–brain barrier or blood CSF barrier, IT trastuzumab offers a direct approach to the leptomeninges. (from: "Intrathecal trastuzumab: immunotherapy improves the prognosis of leptomeningeal metastases in HER-2+ breast cancer patient", US National Library of Medicine)

The decision to go this route is the first time I have felt hopeful in a while. My oncologist is nervous about side effects and finding the right dose. I had a very intense reaction to Herceptin when I started and because this kind of treament is still experimental there are potentially some very serious side effects (even death). There is also little clarity as to what dose would be both safe and effective.

Anecdotally, and in trials in Montreal (and elsewhere) the response has been very positive, over all. I'm glad my oncologist has been convinced to give it a go. Additionally, my latest MRI has revealed that the three tumours in the brain lining are all stable, so we are feeling less urgency. This is also good news, although I am keen to get started.

The bubble wrap is called a "Bear Hugger" and it's warm and lovely.
The drugs probably helped with that feeling.

i'm aware. are you?

Circulating on Facebook, posted by the late Lisa Bonchek Adams

Yesterday was Metastic Breast Cancer Awareness Day. This is official in the United States but not in Canada. 

I should have written about this yesterday but I was busy getting treatment, which I do every 4 weeks and will continue to do until it stops working. 

Despite a liver that once had "more tumours than you can count" and two brain malignant brain tumours, I have been very, very lucky. As per the graphic above, the median survival of someone with a diagnoses of metastasis is three years. It has been almost 10 years since my original diagnoses and 9 since I learned I have mets.

This October, as we are awash in a sea of pink, I ask you not to go bra-less on my account, get cutesy about where you leave your purse and I don't want to know the colour of your bra, if you are wearing one. And please don't buy pink crap or anything just because it is festooned with a pink ribbon.

Inform yourself for real. Educate others. Donate if you can, to where you money will go the farthest.

In the United States there is Metavivor and the Metastatic Breast Cancer Network. 

In Canada, we have no group devoted exclusively to metastasis but the Canadian Breast Cancer Network has taken on a strong advocacy role and outreach role.

it's deja vu all over again

I've been struggling to write this post for the last couple of days. Two nights ago, a friend of my son's was saying that he finds it much easier to write when he's writing to someone. My spouse shared that he once had a university prof suggest that he get over writers' block by starting his essay as a letter.

To that end, I wrote an email to my loved ones today and, when it was done, I decided that it was clear enough to share here, as an open letter to anyone who reads this.

To: A whole bunch of people I love.

Subject: Surgery May 5. For real this time.

Hello all,

I saw my neurosurgeon on April 22 and he has decided that brain surgery is my best option right now. It's been scheduled for May 5.

The communication around all of this has been terrible (this is the same MRI that he said "looked better" a short while ago). From what I am able to understand (Tim, feel free to jump in here), Dr S (the neurosurgeon) took the images to a different radiologist who he trusts after feeling that he was getting inconsistent information. The two of them decided that it makes sense to take action.

I now have 3 spots on my brain: the mass on the site of the original tumour, a tiny spot deeper in the cerebellum and a new one, close but not attached to the original site (this is the one that is really of greatest concern). From my reading of the MRI reports, this one is either on or very near the lining of the brain.

On May 5, the surgeon is going to attempt to completely remove all spots and then biopsy them. While there is slightly higher risk of complications this time around, the recovery time will likely be a bit better than last, if all goes well.

The lousy way this has played out means that my fantastic plans for this spring have been scuttled. I'm still trying to figure out how much (no bike trip 3 weeks after brain surgery...) and to figure out how to organize our lives so that things go as smoothly as possible.

The kids know as of last night (didn't want to tell Daniel on his birthday) and they are amazing young men. Truly. And Tim - I actually don't have words - is beyond patient, loving and supportive. This is so hard on these guys but they are very good to me.

My pre-surgery MRI is on April 27. I have treatment April 28 and my pre-op appointment on April 30. If memory serves (and there is much I don't remember about last time, including the entire first season of "The Good Wife" I watched in recovery), I won't find out the time of my surgery on May 5 until the day before.

I think you know everything that I do, now. Please, please forgive the group email. It is so much easier to get this out once. I'm stressed but in a reasonably good place and happy to try and answer questions or just chat.

Thanks and with much love,

Laurie

p.s.: It's actually a nice feeling to need to send out a group email. I have so much support. It's good to remember that.

too much. all at once.

Last week, I had CT scans* and treatment on Tuesday, a brain MRI on Wednesday and a bone scan on Thursday. 

There was also an incident on Tuesday evening with one of the boys, which culminated in the following text from my beloved: 

"I now know what projectile vomiting looks like. Can you check Groupon for car detailing deals?"

All is well (we've come to realize that vomiting is an excellent response to anaphylactic allergies) but if none of us has to see the inside of a hospital for a while, that would be just fine.

As I type this, I'm reminded how grateful I am for our health care system. I shudder to think how big the bills would have been, if we had to pay them. We don't have to justify any of these costs to an HMO. We needed care and we got it. 

*I have the results of the CT scans. My abdomen, pelvis and thorax are all still free of visible metastatic disease. 

not as simple as it would seem

As someone living with metastatic breast cancer, I pay keen attention to the development of new cancer drugs. And of course I pay particular attention to the drugs that are likely to one day benefit me.

I have been on Herceptin for 7.5 years. My response was rapid and complete and there is no sign that the drug has stopped working. That doesn't mean, however, that I don't worry about the future and how I will proceed once I come to the end of the line with this miracle drug.

Enter trastuzumab emtansine, or TDM-1, as it was more commonly known. Over the last couple of years, I watched with great interest as clinical trials occurred all over North America. I have been personally in touch with several women who had as thorough a response to TDM-1 as I did to Herceptin. It was very exciting.

Then the trials ended and we had to wait for Health Canada to grant their approval. When that hurdle was cleared, I breathed a sigh of relief. Unfortunately, the sigh was a little premature.

The time between Health Canada approval and provincial funding can be long and complicated. Once Health Canada grants its approval, a body called the Pan Oncology Drug Review (pCODR) assesses the drug, a process that can take up to 149 days. After pCODR makes a recommendation, each province decides if it will fund it. And while this is happening, Ontario, unlike some other provinces "...does not have a mechanism in place that would grant cancer patients access on compassionate grounds to a drug that has been approved by Health Canada."

I heard last week from the Canadian Breast Cancer Network that TDM-1, now known as Kadcyla, has been approved for funding "for the treatment of patients with HER2-positive, unresectable locally advanced or metastatic breast cancer who have received prior treatment with trastuzumab (Herceptin)and taxane". Phew.

[Update: I learned from Delaney (see the comments and the Toronto Star interview) that OHIP funding will only be granted for "second line treatment." Should I need Kadcyla, it will be for third line treatment, as I will already have done my first 6 rounds of TAC (first line) and then the vinorelbine and Herceptin combo (second line). I'm only on Herceptin now but the treatment that follows will be third line. That means I'll only get Kadcyla if my private insurance will cover it. This despite the fact that I have known women who've had Kadcyla as a third line treatment, with great success.]

CBCN is urging voters to contact "local candidates and ask them their stance on improving access to breast cancer treatments." Improving access to cancer drugs is also a goal of FairCancerCare.ca. If you haven't already signed our petition, please do so today. You can also ask your local candidates to sign our pledge to advocate for fair cancer care in Ontario. This is super easy to do and takes almost no time at all via the website.

Meanwhile, I've also heard from CBCN that a drug that crosses the brain-blood barrier is in a phase 2 clinical trial. Will this drug be as effective as it promises to be? Will it be available by the time I need it? 

I'm holding my breath a little.

snarky brilliance credit: Andrea Ross

done with the "good girl"

Since the beginning of my treatment, I have asked questions and attempted to make the most informed decisions possible. I've worked at being a good self-advocate without being difficult, just because I'm pissed off and fed up.

Sometimes that's a challenge.

I am, however, fundamentally, and through lots of conditioning, a good girl.

I've put up with a lot of crap and maybe endured some things I didn't need to, for the sake of keeping the peace, getting through and not rocking the boat. The need for approval runs deep in this girl.

Tomorrow, I go in for further testing on my port. The nurses in the port unit are work in very cramped conditions and seem overwhelmed. Last time I had an appointment, I waited for over an hour to be seen and was then treated like I could not possibly know anything about my own treatment or medical experiences.

After five painful attempts to access my port, they filled it with fluid (what the nurse at the treatment unit the next day, called "Drano for ports") that stayed in overnight. That didn't work. When I next spoke the port-team coordinator, I was told to come in for a "portogram", an X-ray with contrast fluid inserted, so that it will all show up better on film.

I asked "Can you tell me why I need to do this? We know it's broken. What will the portogram tell us that we don't already know?" 

The coordinator seemed taken aback but answered readily enough: If the port does not seem to be obviously broken, they can try a slow flush over four hours of the same fluid that sat in my port overnight a few weeks ago. Apparently, pushing the fluid through slowly can be more effective.

All of this begs the question - Why didn't we just do these things in the first place? Why did I have an ordinary Xray and why the overnight with the Drano?

If the portogram shows that, after more than seven years, my trusty port is truly broken, they'll have to replace it. It's relatively minor day surgery, and worth it to have a working port, as 5 years of chemotherapy has wizened and toughened my poor little veins. The two treatments I've had since it stopped working have been stressful, time-consuming and painful. My arm is still covered in bruises. A working port-a-cath makes treatment so much easier.

But there is a catch. They want to put it in on the other side (it's currently on the left). This would mean another very visible scar, just below my clavicle. And because there is very little fat left on the mastectomy side, the port itself will likely protrude as well. The area just below my clavicle on the right side is already sensitive, the idea of adding a port to that side is extremely unappealing.

I know that, in the grand scheme of things, this is nothing but I'm feeling very annoyed. I think I'm going to dig in my heels, this time. If my port worked for 7.5 years on the left side, I see no reason that a new one can't work on that side again. 

After everything I've been through, it may seem like an odd place to draw the line but this good girl has had it. After tomorrow, no more tests. It either works or it doesn't. And I'm not giving up my left side port without a fight.

twilight zone

Nurse (shouting from the other room): "How old is your port?"

Me: 7 years

Nurse (still hollering): Holey Moley. That's old. (pause) Are you sure?

Me: March 2006.

Nurse: When was it last accessed?

Me: 4 weeks ago, tomorrow.

Nurse: What are you getting?

Me: Herceptin.

Nurse: For 7 years? 

Me: Yes.

Nurse: No. Herceptin is for one year. 7 years is not possible.

Me: It is when you're metastatic.

Nurse: Are you on (name of drug I don't remember)?

Me: No. Herceptin.

Other nurse: It's Herceptin. I checked her chart.

Unbelievable.

ask and ye shall.

Last night, I had dinner with my good friend Sharon, who has twice been treated for breast cancer. She's well now but we got to talking about asking for help during treatment.

We both had teams of people, providing all kinds of support during our health care crises. We were fed, entertained and accompanied to appointments. My kids were distracted and cared for, my dog was walked. My friends even paid to make sure that someone would come and clean my house while I was recovering from surgery.

To me, feeling healthy and strong again means requiring a lot less help. I speak with my oncologist over the phone. I breeze through echocardiograms. I walk or ride my bike to appointments. I even go to my regular Herceptin treatments by myself most of the time.

I feel fine about all this. I like being independent and I don't want to ask people for support when it's really not needed.

But sometimes it is.

On May 2, I have a brain MRI. These are always fraught with anxiety for me. My head is wedged into place and then encased in a small tube. And it's unbelievably noisy. I'm reasonably good at self-soothing and yogic breathing but as I force myself not to mind the physical discomfort, I start to worry about results. What will the radiologist see in my images? What can the technical staff see, as they test is being done?

There is not enough meditation or Ativan in the world to make this a pleasant experience.

Tim has come with me to my last few MRIs but on May 2nd we have a child care conflict. I was contemplating going alone when I was reminded by my conversation at dinner that there was another option: asking for help. 

When I got home, I logged on to Facebook:

Within minutes, I had a friend who offered to go with me and someone who said they'd be backup. And there were so many others who couldn't go but who sent their love and support or said they'd be there with me in spirit.

And they will be.

Note to self: Ask for help, even if you think you don't really need it. You'll be very glad you did.

grounding

This is a treatment week and it's different every time. I get Herceptin over 90 minutes, Demerol to keep me from reacting to the Herceptin and Gravol (Dramamine in the US) to keep me from getting nauseated from the Demerol. Fun times (the actual infusion of Demerol can feel sort of fun. For a while). 

Afterwards, I never know how I'm going to feel. I've had doctors express surprise that I feel lousy after getting Herceptin, yet the nurses do not. I choose to believe that it affects me intensely for the same reason I reacted so strongly - because it's a drug that works for me.

Some rounds are pretty good, the last one was awful and this one has been somewhere in between. I feel worse today than yesterday. I haven't forced myself to exercise and perhaps that's the wrong thing. I did write a lot yesterday and was very productive in a sedentary way. Maybe I overdid it.

I'm always second-guessing myself. Sometimes, it's no fun being in my own head.

At any rate, I am tired and cranky. I've skipped yoga but I will get out of the house to meet a friend for coffee and then take Daniel to drum lessons.

I've been working my way through Julia Cameron's Walking in this World. While it's not as life changing of as my experience of the Artist's Way, there are lots of interesting bits.

Today I had to do a very well-timed exercise. I had to list 10 things that make me feel more grounded. I ended up with 11.

Here they are, in no particular order: 

1. Making lists.

2. Doing something with either of my kids, just for fun.

3. Hanging out with Leslie.

4. Reading a book and writing/talking about it.

5a Knitting.

5b Knitting with Karin and Deb.

6. Folding laundry.

7. Crossing things off my to-do list (see first item).

8. Taking a shower.

9. Journalling.

10. Burying my face in the crook of Tim's neck.

11. Going for a walk.

I feel more grounded already. Blogging must be my number 12.

all clear

I just got a call from my medical oncologist. My scans are all clear.

I'd no reason to doubt that but I feel enormously relieved all the same.

Dr. G says I'm now being treated like "a patient with two compartments." I'll continue to take a drug that has protected every part of me, except my brain, very well.

And, until there are new developments, the only thing we can do the area inside my skull is to keep monitoring and decide how to treat tumours if and when they occur. 

My next MRI is in two months. Bring on the tube with the banging!