Category: Uncategorized

On Wednesday, November 19th I was wheeled around to various departments as part of my pre-surgery preparation. As part of this, I was seen by mammography, where they placed three wires in my breasts. These wires were guides for the surgeons – to show them where each of my tumor were.

When I returned from my Thanksgiving trip, I discovered that I’d received three letters in the mail. Each stating that the mammogram that I had on November 19th was “normal”.

I had head about this happening. I had heard about organizations that did things like send out annual mammogram reminders to women who have had double-mastectomies (you don’t do mammograms when you don’t have any natural breast tissue).

Rather than dismissing the letters – I sent along an email to the supervisor I had chatted with back when we had issues with wait times in mammography. Since the supervisor gave me her card, I decided to use it.

So now the supervisor knows that the automated system is sending out these letters at times when it is inappropriate. She knows that the system is broken, and can now report it to someone who can fix it.

As an engaged patient, part of my responsibility is to report broken systems. If I tell someone who can then report the problem to someone who can fix it, then I’m doing my part to help improve the systems for everyone that follows …

Here is hoping that women who are undergoing treatment for breast cancer, don’t get any more reports of “normal” mammograms for procedures to help remove the cancer. Let’s save the “normal” results for post treatment, when we can actually celebrate them!

I follow Katie Ford Hall’s blog. In a post titled Birds and Rabbits she summarizes a portion an article by Christie Aschwanden on the Case Against Early Detection – where Cancer is categorized into four types. I’ll quote Katie here:

Here’s where she gets brilliant.  She describes four types of cancer:

1. The Turtle – a cancer so slow-growing that it will never become an existential threat.
2. The Rabbit – a cancer that is growing and spreading rapidly. This is the “relentless progression” type. Again, however, the biology of the tumor dictates whether current treatment methods are curative, and as I am so fond of saying, we only know we are cured if we die of something else.
3. The Bird – a cancer that will become fatal before it is detected. Some have speculated, for example, that some breast cancers hides in the bone marrow, inactive and undetectable, then reactivate as metastatic breast cancer in the future. This “seeding” might even happen before the initial detection, no matter what at what stage the primary tumor is discovered.
4. The Dodo – a cancer that will die off on its own without treatment.

And here are interesting paragraphs from the original article by Christie Aschwanden (bolding is mine and not in the original article):

What’s clear is that cancers fall into a few general behavior patterns, which Welch and others have compared to animals that must be kept in the barnyard to prevent a deadly rampage. Papillary tumors are like turtles — they move very slowly and never pose an escape risk. They don’t need screening, because they will never cause trouble. Then there are rabbits, which are eager to hop away to other parts of the body, but can be confined if they’re found and fenced. These are the cancers that can be helped by early detection and treatment. Birds, on the other hand, are so flighty and quick that they can’t be confined. Screening makes no difference for bird cancers, because they’re so aggressive that they can’t be detected before they’ve begun their deadly course.

No cancer screening has ever eliminated the majority of cancer deaths. Instead, the best screening can do is reign in the rabbits. Birds remain unstoppable, and they’re the ones responsible for most cancer deaths. This is why, Welch says, three decades of mammography have failed to put a dent in the rate of women presenting with metastatic breast cancer upon their initial diagnosis. Women with breast cancers that behave like birds will almost never be helped by a mammogram, nor will men with the most aggressive prostate cancers be saved by PSA tests.

First I want to say that cancer is complicated. There is no one right answer. I agree that in some cases early detection doesn’t matter … in some cases early detection does more harm than good (over diagnosis/over treatment) … in some cases early detection saves lives.

In my case, I’m not convinced an annual mammogram would have made a difference. I am of the firm belief that if I had done an mammogram in January (when my doctor initially ordered one), it would have shown nothing, because I didn’t have cancer in January. Further, it would have been harmful if I were to rely on an annual or bi-annual mammogram and did not conduct my daily inspection of my breasts. I found my cancer early through breast self-exams.

When we talk about cancers using the classification above, I’m hoping that my cancer is of the Rabbit type. We know that it grew quickly, but I also caught it early. The primary tumor was certainly fast growing (that was confirmed by the initial biopsy). My current plan is to die of something other than breast cancer …

We had not planned for snow in Welland – but Canada is very unpredictable at this time of year. We borrowed some winter boots and jackets, and ventured out for a 3 km walk. As we walked, we were reminded of the crisp smell after a fresh snowfall.

Living in California, we definitely do miss winter. One a lovely sunny day, with fresh snow, we are reminded about why we love winter. Now, had it been wet and windy, we would have been reminded about what we love about California.

I have been struggling lately with walking. I want to walk more – my lungs want me to walk more – but my ankles are not letting me. My ankles are quite swollen and they are not moving properly – as a result, when I walk my calves cramp up (and I have shin splints). It is all one vicious circle that leads to me not getting enough exercise. I hope that when I see my oncologist next Thursday, that we can start some form of treatment for the neuropathy and the ankle swelling, so that I can start to exercise more. I’d like to be a little stronger before going to my next surgery on December 17th.

For today, I’ve walked 3km and met my goal of 5,000 steps per day (not a very aggressive goal, but for me right now, this is a lot).

I have found some temporary relief in the form of Voltaren gel. It is available over the counter in Canada (it looks like it is prescription only in the US). I noticed that it made a huge difference to the arthritis in my hands … so I tried it on my ankles. I notice immediately that I’m negotiating the stairs a lot better. So, I’ll be bringing a big tube of it home with me. If it helps me keep walking, that is a good thing.

Today will be my first post-surgery flight. I didn’t leave it too long  … it has only been a week since surgery. In the surgery, I had a sentinel lymph node dissection (SLND) on both sides (bilateral). If I were to listen to the rhetoric on the various breast cancer support group sites, I should be flying with compression sleeves on both arms – cause the removal of lymph nodes means I’m at increased risk for lymphedema. If you listen to the rhetoric, you might think that my arms will immediately swell upon entering the airplane. Fortunately, this is mostly just rhetoric. There are cases of lymphedema, but they are not as prevalent as the various patient communities would make you think.

I searched for credible information on lymphedema and flying and found this article: Lymphedema: Separating fact from fiction on the Cancer Network website (the article is free, you just need to sign up for a free account). I recommend that anyone who has had breast surgery involving lymph nodes take a read of this article – as specific quotes and scenarios can be drawn based upon your specific situation. In my case (I bolded a few key points):

• “Several retrospective studies have shown that the number of nodes removed and the risk of lymphedema do not correlate.”
• “Despite various lengths of follow-up, from 6 to 60 months, the prospective trials vetting SLNB as the standard of care for axillary staging demonstrate significantly reduced rates of lymphedema after SLNB (0 to 7%) compared with ALND (12% to 16%)”
• “Importantly, though, they also confirm that even with SLNB a small but clear risk of lymphedema remains.”
• “The fact that women having more than 10 nodes removed during SLNB did not develop lymphedema but women with the same number of nodes removed after ALND did reaffirms that the relationship between the nodes removed and lymphedema is complex. “
• “Although Boccardo et al documented that increased education and awareness can reduce the incidence of lymphedema,[30] it is also possible that increased education can influence patient anxiety.”
• “For example, more than 98% of women who have undergone ALND avoid blood pressures, intravenous catheter placement, and needle sticks in the ipsilateral arm, while more than 80% of SLNB patients do the same without documented benefit and theoretically less risk than those having ALND. Examination of the recommended risk-reducing behaviors reveals few objective data for or against each measure.”
• “The authors observed no difference in lymphedema rates between fliers and nonfliers (P = .42), but interestingly they found the practice of precautionary behaviors to be associated with an increased risk of lymphedema (OR, 6.2; 95% CI, 1.2–20.8; P < .04) among those flying.”

One of the challenges I face is that the precautionary advice regarding things to avoid in the affect arm (e.g. needles, blood pressure) can usually be done in the unaffected arm. For me, I don’t have an unaffected arm. So, I need to analyze the risk more deeply. Is it really a risk? or an unnecessary precaution? Good question!

Last night we were rudely awakened at 1:30am by fire alarms. I was surprised at how quickly I jumped up, and threw on a sweat shirt (over my head) … this is somewhat ill-advised in my current condition (with two to three inch incisions under my armpits). I didn’t feel it at the time, and they really aren’t too painful this morning, so I appear to have gotten away with it.

So, we found ourselves standing outside our apartment at 1:30 in the morning waiting for the alarms to stop. The weather was beautiful, so we decided to take advantage of the fact that Safeway is open 24 hours, and walk over to pick up a snack and some cranberry juice. By the time we finished shopping, the alarms had stopped. We could actually hear the alarms when we were outside at Safeway!

When the alarm first went off, Scott stepped out to take a quick look around to see how quickly we needed to evacuate. There were no signs of smoke or anything we could detect, so we took a few minutes to get organized before leaving (grabbing passports and wallets). What this pointed out to us, is that we don’t have an emergency plan. We don’t have a grab bag or a check list or anything to speed up the evacuation process. If Scott had gotten stuck outside when he did his quick look around, we didn’t have a plan as to how long I should wait before leaving, or where we should meet. We definitely need to think about these things. I encourage everyone who is reading this to take a moment and contemplate their emergency plan.

Upon returning home, we found out that the alarm was triggered by someone smoking in a stairwell. All the public areas are non-smoking areas. Someone was too lazy to go outside (on a lovely night) to have their cigarette, and as a result, the entire complex was evacuated for at least 30 minutes. I do hope they find the person and give them a huge fine. I would not be surprised if the fire department (or City of Santa Clara) fined the Home Owners Association for the false alarm.

I told Scott before surgery that the one piece of information I wanted when I woke up was the status of the sentintel node biopsy. I was right – Scott tells me that I asked at least 5 times while in the recovery room, and was happy each time he told me they were clear.  The surgeon just came into my hotel hospital room to tell me that “the preliminary results are clear but that they are preliminary results”. So, it is a very good news, but it is to be taken with a caution as they haven’t done the more detailed pathology. The prelim results are on the order of 90% accurate. What I can say is that I’m completely relieved. The sentinel nodes are typically the first place that breast cancer spreads. If my nodes come back from pathology as clear, then my cancer was caught at Stage 2. 

After a longer visit with the Fellow, I got more details. They took 2 or 3 nodes from each side – a little more on the left. They like to take at least 2 for pathology. She emphasized that there was very small risk of lymphodema. The bigger concern over the next week was to avoid things that might tear incisions or injure the surgery sites.

Scott’s observation from the surgery team the only male he met was the OR nurse. All my surgeons, fellows, residents, anethesiologists, etc. were female. Interesting!

We had an OK nights sleep. They gave us a private room so Scott was able to stay the night. This turned out to be very useful, as several times I benefitted from having a patient advocate (things like helping out when I needed to use the toilet). It also meant that he was here for most of the doctor/nurse visits. 

In sugery they put these cuffs on my calves (sort of like blood pressure cuffs but with less air) that gently massage my calves. It is done to avoid blood clots, but has really helped with the tight knotted calves that are a results of neuropathy and swollen ankles. 

One thing that really impressed me about the Stanford Hospital is that they use room service for food. The menu is quite good, and so far the food has been good. The food is locally sourced where possible, and there are organic options. There are even organic options for those on a liquid diets. This is one area where I think it makes a huge difference in patient wellness. The food has been good enough that we decided to check out after lunch rather than before. That way I’ll go home well drugged and well fed. 

to say that we are home from Hawaii safe and sound. We had a great trip! I’m very glad that I spent the last week snorkeling and generally enjoying myself. I’m not sure how I would have coped if I was home thinking about surgery.

I have a busy day tomorrow with pre-surgery stuff (blood tests and a photo shoot), plus we have dinner with a friend from Ottawa who happens to be in town.

I apologize if I’m tardy on sending responses to email and other items. I seem to have a to do list a mile long and very little time in which to deal with it.

We have fallen into a bit of a morning routine here on Maui. Get up and make a coffee & smoothies, watch the turtles playing in the surf from the lanai (patio) of our condo, then head out for a morning snorkel. The snorkeling itself hasn’t been as good as it was back in February – perhaps I’m remembering wrong, but I recall seeing a lot more fish back in February.

Snorkeling, I found myself struggling with the logistics of how to manage going topless. If you recall, the entire purpose of this trip was to go snorkeling topless with the turtles. I knew I wanted to do it, but couldn’t figure out how to manage it – there aren’t that may places to discretely enter / exit the water without a top on. Fortunately, Nicky figured it out – it was just a matter of wearing a one piece, and slipping down the straps. With this technique, I can easily go topless without having to worry about losing any articles of clothing, and I can easily put my top back on before making my way back to shore.

With the logistics figured out, I decided to give it a try yesterday. It was wonderful. There is a whole new sense of freedom when you swim topless 🙂 … Unfortunately, there were no turtles where we were snorkeling – they all seem to be hanging out just outside of our condo – where the entry / exit for snorkeling poses a challenge – perhaps tomorrow we will give it a try.

On the neuropathy front, things aren’t going so well. I had hoped that as time progressed the neuropathy would get better. Honestly, I had hoped that within a week of ending chemo most of the neuropathy would have gone away! My expectations of recovery were overly ambitious to say the least. My ankles are swollen and my calves and forearms are all knotted up. Fortunately, this does not seem to negatively impact my ability to snorkel; however, it does impact my ability to walk. So for now, I’m getting my exercise snorkeling in the morning. We’ll see how things over the weekend.

I’m not sure there is actually such a thing as chemo recall. There such a thing as radiation recall – where something prompts your body to remember radiation burns and your skin turns red where it has been irradiated.

I had hoped that with each day past my regular infusion day, my side effects would start to get better. Unfortunately, some of them are actually getting worse. It is as if my body remembers that on this day you get a new dose of chemo, so the cumulative effects should continue to get worse. Now, in addition to stopping the chemo, I’m also not taking any steroids (one of the chemo pre-meds). So, I’m not getting the thing that boosted me up each week.

Today I’m feeling nerve pain, which is causing my muscles (mostly in my calves and forearms) to go tense, my feet are totally numb, and my joints are weak. It is rather frustrating, as I want to be feeling better, feeling stronger, feeling ready for an activity filled vacation in Hawaii. I continue to remind myself that recovery will take time, one day at a time…

When I was first diagnosed and I was in that awkward waiting period – the time when you know you have cancer but you haven’t received your pathology so you don’t know what kind of cancer – I recall telling Scott that I would feel like an impostor if I didn’t loose my hair. I saw losing my hair as a right of passage for someone with cancer. That was before I knew that much about breast cancer and chemotherapy.

Not everyone with breast cancer needs chemotherapy. Not everyone with breast cancer loses their hair. However, most people with breast cancer that go through chemotherapy do lose their hair. For those that really want to preserve their hair, there has been some research done with cold caps – these are special caps worn during chemotherapy and for 4 hours afterwards in order to help preserve hair. I’ve met several people who tried them – they have had mixed results with keeping hair, and they are rather painful (imagine putting ice on your head for 6-hours – they get changed out every 30-minutes, so they don’t get warm). This certain had no appeal to me, but I do know several people who would have jumped at the opportunity to keep their hair.

When it was confirmed that I was going to loose my hair, I used that as an excuse to buy a bunch of different head coverings. As someone who mostly works from home, I didn’t have much use for the various head coverings I have, but a little retail therapy made me happy. A friend sent me some scarves from Egypt – which I treasure – but don’t find that I wear, mostly because they take too much effort to put on. What I wear most frequently are the survivor “buffs“, of which I now have 5 or 6 in various colors. I used my baldness as an excuse to buy a bunch of them – cause I’ve always loved them and wanted more, I just couldn’t justify purchasing them until now.

If you just looked at this blog, you’d think that I mostly went outside with my head bald. I have no shortage of pictures of me sporting a shiny head. In reality, I’m actually quite conscious when I appear without something covering my bald head. I almost always throw on a buff or some other form of head covering before leaving the apartment – even when I’m justing running out to the elevator to dispose of the trash. It isn’t me that I’m worried about. I’m worried that my baldness will make others feel uncomfortable.

Lately, I’ve been fixated on my hair as it starts to grow back. I find myself examining it each day, to see if there is any noticeable change. Of course, because I examine it daily, I don’t usually notice much difference. I’m most annoyed with my eye lashes. I seem have lost a bunch of them on the right side – so I have gap in my eyelashes. There are small black dots where new lashes are starting to come through – but they are growing rather slowly. I keep hoping I’ll look in the mirror and one day, magically, they will be back. My head is now covered in a layer of peach fuzz about half a cm long. In addition, there are short dark spiky hairs. I’m not sure if the peach fuzz will fall out and be replaced by dark hair, or whether the translucent peach fuzz will turn into dark hair (such that I’ll need to shave it again so it grows in nicely).

Now that the chemo is done, I can anticipate that my hair will start growing back – and maybe even filling in. It will probably be another 2-3 months before I don’t feel like I’m walking around bald.