Tag: chemo

The pains with the American system

Having decent insurance has made most of the process of cancer treatment go smoothly. You’d have thought with a week of advance notice, it would all be figured out … but not so much.

The chemo went well today – well seems like an odd word to use w.r.t chemo – it went, I’m feeling a little stressed (just took something for that). Don’t think I’m feeling any nausea, but I’m not sure if worrying about nausea is causing nausea or if I’m actually feeling nausea .. so we will wait until the anti-anxiety meds kick in and then decide if I need / want another anti-nausea pill. I have several options, so all is good.

Talked to the oncologist about medical marijuana. The oncologist didn’t see any problem with it, but he couldn’t write the prescription (against Stanford policy). He did warn us of dosage issues – in that you often cannot accurately measure the dosage (very dependent on where you get it). Nor can my family doc – although my family doc suggested I see one of the various “pain” docs who do write the prescriptions. It is a bit of a game, but we have followed the rules so far. Next step is to find someone to write the prescription. Some of the docs that write the prescription also issue “cards” which is all you need to purchase marijuana at one of the many local dispensaries (indicated by a green cross) – however, there is also an official card that one can get from Santa Clara county for $150 after the doctors note. Some dispensaries/collective actually test the stuff to make sure they label the dosage correctly – others, not so much. Honestly, right now we are just setting things in motion, so that if it becomes needed it is an option. I’m worried about the side effects of the anti-anxiety drugs (they can be habit forming) – so alternatives might make more sense. We’ll see.

On the other side of things, I’m supposed to get a neulasta shot tomorrow – which is used to boost the white blood cell count. My insurance company won’t approve me going to Stanford for the shot – rather, I’m supposed to do it myself. It is a subcutaneous (in between skin and fat) injection, which is similar to how one gives insulin, so Scott is rather familiar with the process. My chemo nurse at Stanford gave us a lesson on how to do it. It is actually going to be more convenient for us this way, as it means that Scott can give it to me after work, rather than having to take more time off to drive up to Stanford for a simple needle.

The problem is getting the actual medication. Stanford put the order into my pharmacy but the insurance wouldn’t go through (the neulasta shots are about $4000 each). So they called Stanford who tried to get it approved, only to be told that we needed to make the request (so it couldn’t be made on behalf of us), we called, to be told that there is no pre-authorization, so Stanford needs to call to do the pre-authorization (and get an urgent pre-auth done). Once we hear that the pre-auth is done, Scott needs to call back Express Scripts and have a supervisor do an override (which may also need insurance authorization). Once we get the override, then our local pharmacy can fill the prescription. However, this all needs to happen before 8pm tonight as the pharmacy doesn’t stock neulasta, so they need to order it today so that it arrives by mid-day tomorrow.

If we don’t get the insurance approval until tomorrow, we will need to find a pharmacy that actually stocks neulasta (either Stanford or hopefully one at the Palo Alto Medical Foundation, as they are closer).

One way or another it will happen … just a lot more drama than I would have liked. Not sure why this pre-auth requirement didn’t surface sooner as they have known for over a week that I was starting chemo today. But, as the saying goes, ‘it is what it is’ … we shall deal with it.

Mon July 7, 2014
First day of chemo

So today was day 1 of chemo. It was a little emotional when she pushed the Doxorubicin (A) – they closed the curtains when I started crying – but the emotions didn’t last too long. The A only took about 10 minutes (three vials).

While they were doing it, the person across from me was serenaded. When you have your last treatment, all the nurses get together and sing you a goodbye song “hey now your chemo is done”.

The Cyclophosphamide (C) takes an hour via IV drip bag. I don’t notice much except the smell. Even with the saline I notice a smell. It is kind of weird because it is a smell that comes from the inside of my nose, rather than something outside. Very odd.

I am very thankful that Scott is here. He has been refilling my water bottle and retrieving random things from my bag, so I can sit back in the lazy boy and relax.

So far, so good.

Mon July 7, 2014
I’m ready
I am so ready to make the transition from someone with breast cancer to someone fighting breast cancer. Tomorrow morning, bright and early, I begin chemotherapy – assuming the heart ultrasound and blood tests say I’m healthy. Ironic (in an Alanis Morissette kinda way), the idea of being in ‘excellent health’ and having cancer at the same time.

I’ve got everything laid out for my ‘cancer’ bag – that is the bag I bring with me when I go up to Stanford for the day. I received it from BC Connections, a local Breast Cancer support organizations. It has proven to be very handy (both the bag and the organization itself, as this is where I go to support group on Saturday afternoons). I have even chosen my clothing for the day. I bought a new t-shirt that has a low neck line so that my port is easily accessible. I’ve included:
- A nice warm blanket/wrap that I received from the Three Willows church where my in-laws go (thank-you).
- A scarf that I received from my friend Maha in Egypt (thank-you).
- Care squares that came from a family friend (thank-you).
- A teddy bear that Scott brought me when I was in the hospital for surgery before we were married (with the Canadian connection Hudson Bay sweater).
- Some snacks and electrolyte mixes to add to my water bottle.
- My cancer treatment binder, which includes a bunch a cards and the caring card I received from the Ottawa First Unitarian Congregation (thank-you), the card my mom sent with a hope rock on it, and various post cards sent from distant friends (thank-you).
- Headphones, so I can watch TV or listen to music or podcasts. I have a collection of Vinyl Cafe Stories and Under the Influence podcasts preloaded on my iPhone.
I hope I’m not forgetting anything. I will also bring both my laptop, my iPad, and iPhone. I have no idea what I’m going to feel like doing during chemo. Scott will be there to help lug my stuff – bringing both the laptop and iPad seems a little redundant, but if I am in the mood for any serious writing (beyond blogging), my laptop has scrivener on it. Plus my laptop let’s me watch TV shows from Canadian networks, which I cannot do on my iPad.

I’d also like to thank John and especially Alison for the lovely quilt they sent. BC Connections had quilts for anyone going through chemo but I chose not to take one, as I see so many other women that need it more than I do. The following Monday, I received a lovely quilt from Alison and John in the mail. It has turned out to be perfect for our bed, as our down duvet was too warm for this time of year, but going with a just a duvet cover wasn’t warm enough – we were having trouble finding just the right balance, and the quilt is proving to be just that.

Everything that I’ve read so far about chemo side effects says that it varies by the person. I’ll either be tired for the first few days or overly energetic for the first few days and then tired towards the end of the cycle. If you know me, you know that I like to plan things. This whole uncertainty over how I will react is driving me crazy. I just need to know if I’ll be able to get some work done for a few days here and there or not.

Since diagnosis, my life has been pretty focused around improving my health (lots of long bike rides and long walks); enjoying myself (sailing, going to Yosemite for a couple of days; various medical tests, scans and appointments; and learning a whole lot about breast cancer in general, and specifically about the treatment options for the type of cancer that I have. I have put all my contract work on hold (fortunately, that was possible). I’m now starting to go stir crazy, and hope to get back to some of that work – however, I just don’t know how I will react to chemo, so I’m afraid to jump into anything right now. So the wait game continues … today I wait … I’m going to go for a swim, go out to the market (now that my stomach is sorted, we need some food in the house – although chemo may change that too), and maybe even go for a bike ride.
Sun July 6, 2014
Preparations

I’ve talked before about how other things I have done in my life have prepared me well for this new journey. At the chemo class yesterday, the nurse talked about taking it one step at a time but also about celebrating between the various phases. This is very much the same advice given when you start a PhD. It is said “this is a marathon, not a sprint”.

Also similar is the challenge in planning. Many of my PhD friends can relate to the challenge in planning things like family vacations. There are so many variables, and so many uncertainties, that planning is difficult. You want to make sure you are in a good place to actually take a break.

And I’m a planner. I’m someone that likes to have things mapped out. I had my schedule mapped up to the end of 2014 – exactly how I would get my data collection finished, the number of trips to Ottawa, various conferences. Now I just don’t know. It is nice (and yet scary) to have a start date, but there are still so many uncertainties. I’ll get to learn a lot about blood counts – if any of my counts fall too low, they will pause treatment to allow them to recover. This of course, will put a wrench into any plans that I make.

Fortunately, I also have the experience of our bike trip to draw on. There, we adapted. Although we still had some scheduled components. We had container ships to catch – and the ships wouldn’t be waiting for us – we needed to be there when they were there. At times, that meant using trains or buses to help us get to where the ships were going to be. We had to adapt our plans.

With the shift of chemo start to July 7th, and hopefully not too many doctors appointments next week, we have a chance to get away for a few days (we hope). Well before the whole cancer thing, we had booked a campsite up at Yosemite for a few days. Although we had originally planned for four nights, we may only go up for a couple of nights – but still, it will be nice to get away. I have not yet been to Yosemite, so it will be nice to see what all the fuss is about.

Thu June 26, 2014
Significance of dates and getting ready for chemo

It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care.

Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

Chemo calendar:
July 7 – AC
July 21 – AC
Aug 4 – AC
Aug 18 – AC
Sep 1 through Nov 17 – weekly T

Thu June 26, 2014
The calm and then the storm

Yesterday was one of those calm then stormy days. It began with a breakfast meeting with a new friend, whom I met through the social network myBCTeam.com. It turns out that we have a lot in common, and I think we would find ourselves as friend regardless of the cancer connection. She has a wealth of knowledge around breast cancer and resources available, which I’m sure will prove to be very helpful. I never thought that having breast cancer would be the thing that made it easier for us to meet people in California.

I had not heard anything from Stanford until the afternoon. Then I got a call from interventional radiology. These are the folks that place the port. I now have that booked for Thursday. They use twilight sedation, similar to what they do with cataract surgery. They use a small incision (exactly what small means is definitely relative) to place a port directly into the vein. The port lives under the skin, so once the incision is healed I can swim and shower/bath without worry.

Shortly thereafter I had a call from my oncologist (MO). He suggested that I could start chemo as early as Thursday – right after the port is placed. His call had woken me up from a pretty sound nap, so I was not even sure how to answer. I had to first answer the question of ‘which chemo’. I decided on AC-T. I had a gut feel about that one from the beginning. The MO said it was the one that about 80% of women who need chemo for hormone positive breast cancer get (this means they understand the side effects and how to treat them). Also, shortly after making that decision, my second oncologist confirmed that is the one she would recommend. So, I’ve heard from multiple sources that it is the right choice – and it feels like the right choice. So, both quantitative me and qualitative me agree on this one.

I decided that I will not start chemo on Thursday even if it is an option (it still needs to clear insurance). It is all too fast, and I need to be mentally and physically prepared. Mostly, I need to ensure I’m well hydrated for a couple of days before and the placing of the port with twilight sedation means fasting prior to – so pretty the opposite of what my body needs.

So, if I start on Monday it will go something like this (assuming there are no issues that cause breaks):

June 30 – AC
July 14 – AC (on this regime, hair typically falls out after second treatment, grows back during T)
July 28 – AC
Aug 11 – AC
Aug 25 – T weekly for 12 weeks (until November 10)

Some people are completely tired/fatigued during chemo. Others continue to work throughout. Apparently getting regular exercise helps to reduce the side effects, so I shall be trying to get out for walks and regular bike rides although perhaps not climbing too many mountains. Fortunately the paths near here are pretty flat. If my balance goes, we’ll look into renting or buying a used trike … we’ll make this happen!

After that, there is a break for recovery before surgery. We are thinking a week or two on the big island in Hawaii! Last time we went to the Big Island (in 2006) we wanted to rent a VW camper van, but couldn’t because our Canadian car insurance would only cover continental US and we couldn’t find anyplace to buy insurance. Now that we have US car insurance, we’ll look into that option again.

Wed June 25, 2014
Knowing what to expect
“In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

The two options look something like this:
- option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
- option 2: docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC
They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.
Tue June 24, 2014
Double-mastectomy and chemo

If I’m repeating myself, I apologize. One thing that I’ve noticed over the last two or three days is that my short-term memory sucks. I cannot seem to hold thoughts for that long, and I am very often walking into a room having completely forgotten why I was there. Worse, is that I sit in front of the computer intent on doing something, then have no clue what that was, and am easily drawn in many different directions.

Today we had a meeting with the surgeon and then oncologist at PAMF. I also had a phone call from the social worker, but I didn’t get a chance to talk to her because I was driving at the time.

There isn’t exactly a plan for treatment yet, just some general recommendations based upon the known pathology. There is a key test (the HER2) that is expected early next week. The preliminary HER2 was inconclusive, and we need to know if it is positive or negative, so they send samples off to a different lab for further testing. To simplify the discussion with the oncologist, we only went over options that made sense for HER2 negative (which is 80% likely).

The surgeons recommendation is a double-mastectomy. I had concluded this as well when the right came back positive, as I have two separate cancers in both breasts. What is interesting here is that prior to having cancer, I always thought that if this happened to me, I’d want it out immediately. Now that it has happened, I’m not as certain. Yes, I want it out, but the decision over chemo or surgery first is an interesting one. I have decided that I will not do reconstruction. This makes the surgery much simpler. Reconstruction brings with it a lot of risks, and frankly, I’d be happy to never have to wear a bra again! My nipples have never been a source of pride, and with reconstruction, I’d likely look all or most feeling, so if they are not a source of sexual pleasure, then there isn’t a lot of point to keeping them. Especially when nipple sparing surgery is both more complex and can potential increase the chance of re-occurance. So, it is logical. I like logical. And in some ways it is a relief to have the decision made.

So far, both cancers (left and right) have the same characteristics (HR-positive and PR-positive). Given the growth rate of the left, chemotherapy is recommended. The chemo would be the ACT type (assuming HER2 negative). Don’t know too much about that yet, since we just learned it today, I haven’t looked it up yet. The chemo could happen before or after surgery, so this is the big question right now.

Now if I am HER2 positive, that means that chemo will happen first, as there are some HER2 blockers that can only be given before chemo. There are complexities with HER2 – including an increase mortality rate – so if you are inclined to pray, pray for HER2 negative on both sides.

One thing that I’ve learned is that statistics only mean something before you get a diagnosis. They provide hope (e.g. 80% of breast cancers are HER2 negative), but they mean nothing once you have received the diagnosis. It is no longer relevant what the statistics are about HR-positive and PR-positive. Both cancers are positive, so for me it is 100%. Statistics only matter for the unknown future, not the known present.

Having two cancers is not so common, but it certainly made the double-mastectomy question easier. If I only had one cancer, keeping the second breast would have been expected (unless I’m BRCA positive – but that information won’t be available for a couple of weeks – we are hoping for negative here too). I would have then had a harder decision regarding reconstruction. I would have always wondered if keeping the right breast would mean an increased risk of occurrence, and it would mean mammograms every 6-months on the right breast, and constant worry. Plus it would have been harder to figure out clothing and all those complexities. Yes women do it, but I would have found it difficult – a constant reminder. So, the double-mastectomy was perhaps one of the easier decisions.

Tomorrow we go for a second opinion at Stanford. It is also a chance to see the Stanford Cancer Center and decide if it is a better option for treatment. The folks at PAMF saw no reason that I would get any different treatment at Stanford given what we know now. The only thing that might matter is if there is a clinical trial that I qualify for at Stanford that isn’t available at PAMF (the PAMF oncologist didn’t know of any). Stanford in some ways, Stanford has the coolness factor – I could say “I went to Stanford” and I’d wear the sweatshirt with pride. But it is also further away from where we live. At least 20 minutes further, and parking costs $12 (parking is free at PAMF and most of the locations are within 5-10 drive from Scott’s office and 20 minute drive from home). This all adds up. And so far the care at PAMF has been superb. So, although I might have been leaning towards Stanford late last week, I’m now leaning the other direction. But, tomorrow will tell. I may get to Stanford and feel that everything is right there … I am happy to know that I have choices, as choice means that I have some sense of control (I’m a control freak) … and with so much of this, I don’t have any control. So, I’ll take what I can get!

And now, it is definitely time for a good nights sleep …

Thu June 19, 2014