Tumor Markers

Just a quick post with some good news... On Friday, I had treatment #3 of the latest chemo regimen (Herceptin, Pertuzamab, Taxotere) and got some good news - my tumor markers are DOWN! And not just down a little, they are down a lot - from 700+ to around 200.

And these results came in after only one treatment - even Dr. Sara says this is "big," and if you've been following along you already know that Dr. Sara does not sugarcoat anything!

They even showed me the graph - it looks like a mountain.  You can see a sharp incline in early December before my first treatment of the new regimen, and then it's a pretty steep drop after treatment #1.

Obviously this is very good news, as it tells us that the chemo is doing it's job. In addition, during this week's clinical exam, Dr. Sara could barely feel the lymph nodes in my neck, and he also could not feel anything in my abdomen/liver (unlike last time).  Further proof this new regimen is looking pretty effective.

Of course, while all of this is very encouraging, it's also important not to jump to conclusions - this certainly doesn't mean that I am cured, or will be cured, and it doesn't mean that this new chemo is going to work forever.  All it means is that it's working right now, which is amazing and good enough for me right now!

It's even better because this chemo continues to give me no real problems on the side effect front. In fact, the pre-meds I have to take to ward off side effects are giving me more trouble than the chemo itself. I have to take Dexamethasone twice a day the day before, the day of, and the day after chemo.  It tends to make my mouth taste funny, and it's also been affecting my sleep.

I told Dr. Sara about this and he said that next time, I get a 50% off Spring sale - meaning I only have to take half of the dose I normally take.  As long as my feet don't swell (one of the side effects it wards off), I will be able to continue on the half dose and that should alleviate the mouth/sleep issues.

So all in all, it was a very good week at chemo!  Until next time...

Cancerversary

Happy New Year! This year I resolve to be a better blogger. I hate, hate, hate it when I end up making promises I can't keep, so I hereby resolve to blog at least once a month. There, now that it's out in the universe, I will make it happen!

For me, January brings more than cold, dreary weather; a re-dedication to healthy eating and fitness plans; and NFL playoffs (go Packers!). It also brings my "Cancerversary," i.e. the anniversary of the day I was first diagnosed. Some people refer to their "Cancerversary" as the day they completed treatment or were declared cancer-free, but since I don't and frankly aren't likely to have one of those days, at least not anytime soon, I'm sticking with the first definition.

On January 14th, it will be three years to the day that I found out I had breast cancer. I think back to that day and how my mind was reeling with the unknown. Even though in my calmer moments I knew that statistically, most people survived breast cancer just fine, I couldn't help thinking things like "I hope I'm still here next Christmas." Well, I did make it to that Christmas, and the one after that, and the one after that.

And while I still have advanced disease and am still a regular at the Oncology ward at Roosevelt Hospital, I am also still thriving. I still work full-time, travel, and live a full life, despite my diagnosis.

Back on January 14, 2010, I could not have imagined that would all be true despite my dire diagnosis. So for that, I am very, very thankful. I'm not really sure how I feel about the word "Cancerversary," because is the day you receive devastating news really something to put a celebratory notion to?  But if I think about where I am now, versus where I saw myself at this point three years ago, then yeah - that is something to celebrate!

When we last left off, I had started on the new chemo regimen of Avastin and Abraxane. All went fine with that, until my next scans came up in August. Mixed results once again - some cancerous areas in my body were increasing, while others were decreasing. And no, there was still no way to tell quantitatively if there was more or less cancer in my body.

So, Dr. Sara changed my treatment once again. This time, I was put on Adriamycin, Cytoxan and 5-FU. The minute I heard "Adriamycin" I thought "The Red Devil."  You see, I'd heard about this drug. It's been around for a long time so I've read about it in various cancer articles and books. It gets its nickname from its red color (it even turns your pee orange - party trick!), but also because of it's brutal side effects.

Luckily, Dr. Sara assured me that it's not really considered "The Red Devil" anymore because anti-nausea drugs have come such a long way that they can now effectively combat the side effects.

And, surprise, surprise, Dr. Sara was right. I did have some occassional chemo-related fatigue and appetite issues (after one treatment, I only wanted to drink iced tea; after another, it was birch beer), but all in all, it was not bad at all.

Dr. Sara could tell the treatment was doing its job because the lymph nodes in my neck would either stay the same or decrease when he examined them every three weeks I was there for treatment.

But alas, you can't REALLY know what's going on until you get scanned again. My next scan was scheduled for October 30th, but you may have heard about this little incident we had here called Hurricane Sandy.  As it turned out that crane that was dangling from a building in NYC during the storm that was all over the news was just a couple blocks from the radiology place! Not to mention the fact that I was stranded in my apartment in Hoboken for 2 days until the flood waters on my street receded and I could flee to Mom and Dad's, where I was a refugee for a week and a half.

I was determined not to miss treatment though, so even though it took us FOUR HOURS to get to the hospital on the Thursday after the storm (when it should only take about an hour and a half from my parents' house), we made it.

But of course, that scan did not happen as planned, so instead Dr. Sara said we would go one more cycle, and then get scanned after Thanksgiving.

Side note - they have changed the guidelines for the no carb, no sugar diet I need to follow the day before the scan... it's even more restrictive now. So I had to change the PET scan diet routine I had gotten used to - it's all about cheese-less veggie omelets and salad now. No fruit whatsoever, not even apples and blackberries which used to be OK; no cheese; and no yogurt which also used to be allowed. Ugh; at least it's only one day every four months or so!

This latest scan showed results much like the previous two - mixed.  The cancer in all areas of my body except the liver, including my lymph nodes, spine, abdomen, were all decreased or unchanged.  But, there are new lesions in the liver, so another change to treatment was in order.

Of course, the liver is the only vital organ the cancer is in, so it's disheartening that that is the one place the cancer was increasing.  But Dr. Sara reminded me that the liver is one of the most resilient organs in the body, and he assured me that he didn't expect me to start experiencing any effects from the cancer itself, which was good news.

With most cancers, chemo tends to treat all the cancer in the body equally, as it's a systemic treatment. But sometimes with breast cancer specifically, they see cases like mine where some areas can be up while others are down.

Now, I have not been on Herceptin, or any HER-2 drug in about a year, so Dr. Sara's theory is that perhaps the cancer in the liver contains more HER-2 receptors than the cancer in the other areas of my body, which would explain why my most recent traditional old-school chemo regimen wasn't being effective there.

So my new treatment cocktail includes a return to some old favorites. Welcome back Herceptin and Taxotere! They are now joined by newcomer to the party, Pertuzamab.  Pertuzamab is a HER-2 drug very similar to Herceptin, but studies show the two drugs taken together are more effective than either on their own. And Taxotere is more of a traditional chemo drug, which was part of my original chemo regimen back in 2010.  The thinking is that hopefully the Herceptin and Pertuzamab will attack the cancer in the liver, while the Taxotere will keep the other areas in my lymph nodes, etc., quiet.  It sounds like a war strategy, doesn't it?

I've now had two treatments of this new regimen and so far, so good. These drugs are much milder on the side effects scale than my most recent regimen, and that wasn't even that bad.

I did have the new experience though of having an initial reaction to the new drug.  The very minute the Pertuzamab started dripping into my bloodstream, I suddenly got chills. My fever had risen slightly, and my blood pressure was really low. This is a common reaction to any new drug, but it was new for me as I've been on LOTS of new drugs and had never had any problems before. I was given Demerol to combat the reaction, which made me really drowsy - I basically took a nap the rest of the day in the chemo chair.  Dr. Sara was not too concerned and said he did not expect it to happen again, and luckily it did not when I had my second treatment of this regimen last week.

One side effect of the Taxotere is hair loss though, so I will not be getting my hair back anytime soon. Sure enough, right on schedule about 18 days after my first treatment, I started noticing my hair falling out again.  Now, my last few treatments have all caused hair loss and I've noticed it kind of ebbs and flows... it will come out heavily for a while starting the requisite 18 or 19 days after treatment, then it will slow down, then it might start up again, etc.  The result being that right now I have what looks like a thinning buzz cut.  It's not attractive to say the least, though Dr. Sara was quite amazed that I have as much hair as I do even after the Red Devil, I mean Adriamycin.

I have pretty much been "wigging it" since we lopped off what remained of my hair last Memorial Day. And I have added a new style to my wig repertoire as well:

I'm BLONDE! (PS aren't Claire and Ben just the cutest?) This wig is courtesy of the American Cancer Society. The NYC office runs a program providing free wigs to cancer patients.  My friend Bernadette and I had fun trying on the different styles.  Here is one we passed on; I call it my "Vegas look":

And lastly, I'm FAMOUS!  Well, not really, but back in August I was interviewed for a CBS NY special that aired in September leading up to the Komen race. They did a segment highlighting all the great programs at Roosevelt, including music therapy.  Here is the link; you can see me just before the 2:00 part. You will also see Dr. Sara and some of my favorite nurses: http://newyork.cbslocal.com/video/7706895-2012-susan-g-komen-race-for-the-cure-special-part-3/

And here's a pic my Mom took of the "shoot":

Until next time (which will be February - I promise!)...

Catching Up

Yes, yes, I know it's been more than six months since my last post.  It's not that things haven't been happening on the cancer front - they have (but don't worry, nothing tragic) - it's more that 1) I've been busy living my life and 2) lately, in the limited free time that I have, I've found myself not wanting to really sit down and think about cancer.  But that being said, here is the Cliff Notes version of what's been happening over the last 6 months, and I really will try not to go so long without updating next time.

Now, where did we leave off? Oh yeah, my cancer markers spiked, the PET showed some new spots, and so my treatment was changed to Halaven.  The Halaven went well... once again, as seems to luckily be the pattern with me, I did not have any adverse side effects.  The worst that happened was that my nails became really brittle and split, and I had to keep them really short.  Miniscule in the grand scheme of things.

Better yet, the drug seemed to be working.  In January, Dr. Sara re-ran the CEA test and the numbers had dropped significantly.  I remember checking my phone after a meeting with a client on a Friday morning, and I had a message from Eugenie (Dr. Sara's nurse practitioner) with the favorable results.  Now that's about the best news I could've received that day.  I saved that message for awhile!

I got re-scanned again in March, and the results were mixed.  The cancer in my liver and in some of the lymph nodes by my liver had decreased; some of the other spots (like the spot on my spine) had not changed; but there were also two spots in my abdomen which had increased and a new spot in lymph nodes on the right side of my neck (in addition to the left which was discovered in December).


There is unfortunately no such thing as a test that measures all the cancer in your body to be able to tell collectively whether there are more or less cancer cells than last time, so it was hard to say if the results were better or worse, but we were encouraged by the fact that there were decreases in the more "important" areas (i.e. the liver).


So Dr. Sara decided to keep me on the Halaven, but repeat the scan soon - in May - to keep a bit of a closer eye on things.

And then in April during a clinical exam, he could feel that the lymph nodes in my neck were swollen - a sure sign that the cancer there was increasing.  So I was scheduled for another PET scan and even before I had it Dr. Sara had decided on my new course of treatment.

The PET showed that some of the existing spots - including the liver - were more "active" (though not necessarily increased) and of course the cancer in the lymph nodes by my neck had increased, which we already knew.

My new treatment - which I am still on - became the combined forces of Avastin and Abraxane.  Both drugs are 30-minute infusions, and I now go to chemo every week for three weeks, then have one week off.  On weeks 1 and 3, I get both drugs, while on week 2 I only get the Abraxane.

The first day of my new treatment was extra long since the Avastin had to be administered over 90 minutes, to ensure no adverse reactions.  I was in the infusion suite all day - it was like back to the early days of chemo.  But, of course, I did not have any adverse reactions so the next time I received Avastin it was a 60-minute infusion, and now it is down and holding at 30 minutes.

One major side effect of this new treatment is that I have lost my hair again - well, sort of.  It became very brittle and course a few weeks after treatment started - what I call "chemo hair" - and then it started falling out about a week or so before my birthday (May 29).  Even though my hair is so thick that even after week of significant hair loss you still could not tell by looking at me, it was super annoying.  I was constantly vacuuming my bathroom floor and after a week I was tired of pulling fist-sized clumps of hair out of the shower drain.

So over Memorial Day weekend, my brother-in-law Kevin once again put his shears to use and shaved my head.  What a relief!

Oddly enough, it seems like my hair is growing back - I kind of have a crew cut now - but it's still very thin in the spots just above my temples.  I look like I have male pattern baldness, so I pretty much keep it covered with my wigs or any variety of hats/scarves.  I have gone running a few times and gone swimming in the ocean with nothing on my head... it's so hot out, that I just don't care sometimes!  Luckily I haven't noticed any staring.

I've also noticed a little bit more fatigue than I'm used to.  It's manageable; I just find that I need more like 8.5-9 hours of sleep these days rather than the standard 8.  I'm trying to make an effort to go to bed a little earlier, especially during the week, but it's easier said than done.

On the bright side, my nails are no longer brittle and splitty; in fact they seem stronger than ever.  Funny how the different drugs affect things differently.

And the new treatment is working.  Almost immediately, we noticed a decrease in the lymph nodes.  As Dr. Sara said, he of course does not like the fact that I have cancer in my lymph nodes, but it does apprise him the opportunity to be able to tell right away - without a scan - if the treatment is working.

I've now completed two full cycles of the new treatment, and will start cycle 3 this week.  In the last few weeks there has not been a change in the lymph nodes, but this is not cause for alarm or reason to think the treatment is no longer working, since as long as it's not increasing it's good, and there could also be scar tissue there as well.

Pending no more unforeseen drama, my next PET scan will be after the next cycle, in August.  I am coming up on a year since the cancer was discovered to have returned, so here's hoping for a better August than last year!

As I said in the beginning of this post, one of my "excuses" for not posting in so long is that I've been busy living my life.  I am still working full-time and full-force; in fact, iVillage.com did a nice piece on me for doing just that, which you can check out here:  http://www.ivillage.com/real-women-i-kept-working-while-i-had-cancer/4-a-460382?p=2

I am still traveling, both for fun and for work - so far in 2012 I have been to Seattle, Las Vegas, San Diego, Dallas, upstate New York (twice), Washington, DC (a few times), Portland (Oregon), the Jersey shore (a lot), and also have upcoming trips planned next month to Bedford, PA; Denver and Las Vegas (again).

I've also tried to stay active.  I started off the year great with a 5-mile "Hangover" run in my hometown of Hamilton.  Here is my sister - pregnant at the time - and me at the finish line:

While my commitment to staying active has kind of waned in the last few months as I've been adjusting to this new treatment, the summer has re-inspired me to get back to the gym!

And most importantly, there is a new member of our family.  My nephew Benjamin John Kirner was born June 17th.  Now Claire has a little brother!

Here's a picture of the little guy:

And here is a picture of me with both of my little munchkins:

So you can see, it's been a busy year... until next time!

A Little Bit of (Unwelcome) Drama

Last time I blogged, the plan was to get re-scanned in November.  When we looked at the calendar we realized this meant my scans would be during the week of Thanksgiving, so Dr. Sara decided that rather than add some unnecessary drama to the holiday, we'd wait another 3 weeks and do them in mid-December.  This would give the drugs a little more time to work anyway, since between all the co-pay and pre-authorization stuff it took a little bit of time from when the drug was first prescribed for me to actually get it and start taking it anyway.

So, throughout October and November, it was business as usual.  I took my Tykerb and Tamoxifen dutifully every day, and went every three weeks for Herceptin.  I continued to feel no side effects from any of the drugs, and stayed active and healthy (even running a 5K in freezing, windy and rainy weather!).  I even had a music therapy session during one of my treatments (the playlist, handpicked by me, included Coldplay, Kings of Leon and Florence and the Machine).  I even sang along and played accompanying instruments, including a xylophone and the "ocean drum" - and didn't frighten everyone out of the Infusion Suite!

My most recent treatment was the Tuesday before Thanksgiving, and on that day I set up my next PET/CT scan, which was scheduled for December 13th, with the "results show" taking place during my next Herceptin treatment on December 15th.

And then this past Monday I got an unexpected call from Dr. Sara.  Much as I love Dr. Sara, it's usually not a good sign when he calls me out of the blue.  He was concerned about the results of the blood test I had the week before.  One of the cancer markers they test for called CEA, which for me was always in the normal range, had suddenly spiked.  He told me that this is most likely an indication that the cancer is spreading and that he wanted me to get scanned right away so we could see what we're dealing with as he was almost certainly going to have to change my treatment.

My reaction: "well, this sucks".  Dr. Sara agreed with me.  I then asked him if this test was pretty foolproof or if it was known for false positives; I was trying to look for any kind of bright side to this news.  Dr. Sara said that yes, of course false positives are possible, but that he does not think that is what is happening here - he told me that he expected my scans to be worse than they were in August.  Dr. Sara has said from day one that he would always be 100% honest with me and would never sugarcoat things, and he has stayed true to his word; something I really appreciate even though this was a crappy and extremely emotional draining call to get.

So, my PET/CT was quickly scheduled for Wednesday.  On Tuesday I followed the required special diet (yogurt! salad! eggs!), and the scan was pretty routine.  For my contrast "milkshake" I chose apple this time; seemed like an appropriate seasonal choice.

It is amazing what the physical reaction to stressful news like this can be; a lot of people would be losing sleep but for me it's the opposite.  Almost as soon as Dr. Sara called me on Monday, I felt a crushing exhaustion.  I even went to bed at 9pm one night and slept for 10 hours - that is not like me at all (I'm more of a night owl), but I guess this kind of stress takes a lot out of you.

And then on Thursday, my parents and I went to find out the results of my scan.  Dr. Sara cut right to the chase.  If you remember, in August when my scans showed that the cancer was back, it was in three main places: my liver, lymph nodes near the liver, and a small spot on my spine.  This week's scan showed that the  cancer in the liver was actually slightly decreased, the spot on the spine was unchanged, and the cancer in the lymph nodes near the liver was slightly increased.  In addition, there are new spots lighting up in lymph nodes on the left side of my neck.

So, this was obviously not great news, because you never want to see new spots, but Dr. Sara said that it was not nearly as bad as what he thought we might see.  He thought there was a good chance we'd find that it was rampant through the liver, or that it had spread to my lungs or some other vital organ.  Luckily, this was not the case.

Compared to what we thought we might hear that day, we were all pretty relieved to learn that the news was not as dire as it could have been.  It's funny how your reaction to things all depends on what your expectations are.  If my blood test had not spiked and these were my routine scan results, we probably would have been a lot more disappointed because we would have gone in hoping for no new or increased spots.  But, when you are pretty much expecting it to be bad, and it turns out not to be quite as bad as you were thinking, it really improves your reaction to things.

So, what does this mean for my treatment?  Well, my treatment will completely change.  I am being taken off all of the drugs I am now on - Herceptin, Tykerb and Tamoxifen - and I will start getting a relatively new chemo drug called Halaven.  This is a 5-minute infusion which I will get at the hospital.  The cycle is "two weeks on, one week off" - just like the Navelbine was.  I start tomorrow, Monday, Dec. 5, and I will go again next Monday the 12th, then have a week "off" then the cycle will start again on Dec. 27th.

Dr. Sara said this drug is very well tolerated, meaning there are not any common crazy side effects.  Some people feel a little fatigue, and some people experience neuropathy (tingling in hands and feet) but since I've been on chemo drugs where these side effects were much more common and I didn't have them, he expects that I won't really have a problem with this drug. Of course you never know how you're going to react to a new drug, but I've had a LOT of chemo drugs and luckily tolerated them all really well, so I'm pretty confident that will be the case with this one too.

We are going to try this drug for three months, and then - assuming I still feel good and no more blood tests spike between now and then - I will get scanned again in the beginning of March.  Until then, I will keep living my life as normally as possible!

In other news, last time I mentioned that I had received some financial assistance from the Patient Advocate Foundation and the Pink Daisy Project to help me with the exhorbitant Tykerb co-pays I had.  Well, I have two more charities to add to that list!  Team Continuum was very generous to me, providing $600 to my condo management company to pay off my condo fees for the next few months!  And, CancerCare provided me with more than $300 to help offset my financial burden as well!  I can't even express how appreciative I am to these organizations for helping me through this difficult time.  And I especially have to thank two people who put a lot of time and energy into researching programs I would qualify for and helping me to apply for them: my Mom, and Lori, the social worker at Roosevelt.  All in all, with their help I ended up receiving assistance to help pay for more than half of the $5400 I had to pay in three months of Tykerb co-pays.

And luckily, the crazy co-pays did indeed end after three months, and not because Dr. Sara took me off the drug.  In early November, I was able to change my health insurance plan, and under the new plan, my Tykerb co-pay became $30 vs. $1800.  What a relief that was!

And finally, I have say thank you to all of you who donated to the Making Strides for Breast Cancer Walk that my family and I did on October 15th in Bedford Springs, PA.  I really appreciate your generosity and know that your donations are going to a good cause to help other cancer patients like myself!

We had a great time - here are a few pictures from the weekend:

Here is all of us in our "Omni Army" team shirts before the walk.

My Mom and me in our "Survivor" gear:

The "Human Pink Ribbon" of survivors (my mom and I are near the top left):

Me and Claire:

Thanks again for all your support and in case I don't blog again this month, HAPPY HOLIDAYS to all!

It's Back

Unfortunately, the title of this post is not referring to the fact that I'm finally writing after a 3-month absence.

On August 11th, I found out the results of my latest PET scan, and they showed that the cancer is back in my liver, lymph nodes (did you know there are lymph nodes near the liver?  Just another fun fact you learn when you have cancer), and a tiny spot on my spine.

Needless to say, this has been a devastating blow to me and my family.  Even Dr. Sara was surprised by the results and said he is as upset about them as he would be if it were his own daughter.  But unfortunately, this is cancer we're talking about and as I've said before cancer is ruthless, unpredictable, and doesn't play by the rules.

Somewhere in the back of my mind I've always expected that I would likely have to deal with a recurrence at some point in the future, but I didn't think it would be so soon.  I was JUST getting to that thing they call "survivorship".  I finished radiation on June 24th and, except for my ongoing Herceptin treatments every three weeks, I was finally moving on after a year and a half of principal treatment.  And then cancer goes and knocks me back down again (but fear not; I don't plan on staying down for long!).

After Dr. Sara delivered the bad news, and showed me the new areas on my scans (because, by the way, they are all new areas; this is not a matter of the previous liver and spine spots flaring up again), he told me what the new plan was.

He prescribed an oral drug called Tykerb, which many studies have shown has a compound effect when given in conjunction with Herceptin.  I now take 6 pills a day - 5 Tykerb and 1 Tamoxifen - and of course my three-week intervals of Herceptin continue.

I will be scanned again in November, and that is when we'll know if the new regimen is working.  I asked Dr. Sara if it is possible that my November scans will be clear. He hemmed and hawed a little then said yes, it is possible; but he would be happy if my scans were either the same or (of course) showed less cancer than my August scans.  But I'm an overacheiver so I'm going for clear!

I've been on the Tykerb for almost 2 months now, and so far I have experienced no side effects (from the drug or the cancer).  Dr. Sara said the drug is pretty well tolerated over all, so that is good.  I've also had no side effects from the Tamoxifen, which I've been on a little longer.  The most common side effect of Tamoxifen is hot flashes, but I luckily haven't had any.  (Of course, I was originally taking Tamoxifen as a preventative measure, but now I'm taking it as a proactive treatment.  Dr. Sara said that it takes a few months to be able to tell if it's working, so here's hoping that it's doing its part.)

In fact, I feel healthier than I have in a long time.  I've been eating healthier and even started working out again.  I've had a lot of false starts over the last year and a half with the working out thing, but this time it seems to have stuck (so far).  I finally mustered the motivation to go back to my kickboxing classes, which is something I loved to do before cancer, and now I go 2-3 times a week, in addition to running at least once a week.  In fact, I even signed up for a 5K race in a couple weeks!

All in all, I've been living my life as normally as I can.

Dr. Sara says that the fact that my body tolerates my disease and treatment so well is a big advantage in my favor.  He said that he has had patients who have about the same amount of cancer as me, but they have lost 25 pounds (without trying) and are very weak.  With me, you would never know, because my body tolerates it so well.

So what if the Tykerb/Tamoxifen/Herceptin combo doesn't work?  Well, Dr. Sara said that there are still A LOT of things in the arsenal to try.  Luckily, with breast cancer, unlike a lot of other kinds including lung cancer, there are LOTS of drugs to try, and there is so much research being done that there are always new things coming out.  So if my scans in November aren't what we're hoping for, it just means that we'll try something else.

Now, there's another side to this whole thing which was completely unexpected and unwelcome.  It turns out that Tykerb is what is known as a "specialty drug" - I'm still not sure what this exactly means but I think it has to do with the fact that it's a relatively new drug and only available from one drug company.

More importantly, it means that it's a very expensive drug.  Now, I'm lucky enough to have health insurance but even with insurance, my co-pay is $1800/month.  That's not a deductible or anything - that is what I have to pay EVERY MONTH.  It's more than my mortgage.  And it's not like Dr. Sara can prescribe something else that's similar but cheaper - Tykerb is the one and only drug of its kind (no wonder it's so expensive).

I found this out a few days after I found out the cancer was back.  Talk about being kicked when you're down.  Luckily, there are co-pay relief programs out there to help out people like me who are suddenly faced with astronomical bills.  My mom has made it her mission to try - and keep trying - each and every one she can find.

Of course, I don't qualify for many of these programs because several are income-based. However, there are some that are not, like the Patient Advocate Foundation, which gave me enough funds to cover one co-pay!  I was thrilled.  My mom and I have also been working with the social worker at Roosevelt Hospital, who has been very persistent as well and has been helping me apply for various other programs.  Through her help, I received $450 worth of gift cards for groceries (yay Trader Joe's!) and restaurants from the Pink Daisy Project to help offset the cost of my medical bills.  I am so thankful to these programs for their assistance, and I hope that someday I'll be in the financial position to be able to thank them with a donation of my own.

In other news, this coming weekend, on October 15th, my family and I will be walking in the Making Strides for Breast Cancer Walk in Bedford, PA, as part of the Omni Army team (the Omni Bedford Springs Resort there is a client of mine and we're going for a nice fall weekend getaway).  If you would like to donate to our team, you may do so here!

Also, I am quoted in the October issue of Prevention magazine!  Cool, huh?  You can see the story here (I'm at the very end).

Thanks again to all my blog readers for your continued support!

DONE!

Well, after nearly 18 months of treatment, including two courses of chemo, two surgeries, and two courses of radiation, I am FINALLY DONE with principal treatment!  Wahoo!

My last day of radiation was Friday, June 24th.  For the most part radiation went about as smooth as it could possibly go.  During the last two weeks or so of treatment, I was definitely feeling the fatigue that I was told to expect as a side effect.  It didn't really affect me too much - I still went to work and worked a full day every day after radiation, I just had to take it easy in the evenings and go to bed a little earlier. 

And even though I have never been a morning person, I was pretty proud of how promptly I would wake up at 6:45am every day (45 minutes earlier than my normal alarm wake-up time), and I was even early to treatment many days.  But the last week I struggled to get up on time and may have hit the snooze button once or twice.

During the last couple weeks I also started to notice some changes in the skin being radiated.  It started to get a little pink and one area in particular on my chest started to itch.  Dr. Evans said that it is pretty common to develop a little rash in that area, because due to previous sun exposure that spot often reacts a little differently to the radiation than other areas (like the actual breast) which presumably would not have had the same sun exposure.  He did not want to give me hydrocortisone to treat it unless it got really bad, since the cream can constrict blood vessels and apparently blood vessels need to not be constricted to optimize healing.  But luckily a little aloe did the trick!

As I started my last week, I started to think that I had been really lucky that I didn't have to skip any treatments because of the machine breaking down.  Apparently, it's somewhat common for that to happen with radiation treatment.  Both of my parents had to miss two days of treatment each while they were going through it because of the machine going down, meaning their course had to be extended by two days to make it up.

So of course just as I'm getting down to the home stretch and feeling pretty lucky that this didn't happen to me, I got a call on Wednesday night of my last week (with only two more days left!).  The radiation therapist told me that after my treatment that morning the machine went down and hadn't been back up all day.  So, before I came in the next morning, I should call to see if it was working or not. WHAT?  I was thinking I was SO CLOSE!  But luckily, the next morning the machine was working fine and I didn't have to miss anything or push my last day back at all.  Whew!

As I said, my last day was Friday, June 24th.  I think I will always remember that day because it was not only the last day of radiation, but also the culmination of a year and a half of one major treatment after another.  As I walked out of the hospital that morning, I got a little emotional just thinking about everything I have been through over the last 18 months.  I almost could not believe I had finally reached the end of what I am calling "principal" treatment.  It has been a long road.  Yes, there were some tears that morning but they were tears of happiness and relief.

And celebration! When I started radiation, the nurse who gave me my "orientation" told me that one of the medical oncologists - Dr. Sara - um, yes I know him! - always stresses that patients should plan something fun to look forward to after radiation because it is a celebration to have completed what can be a grueling ordeal.  It did not surprise me in the least that Dr. Sara was the origin of that advice!

I did not have a party or anything to celebrate, since the fatigue does not magically go away once your last treatment is done, but I did have a very relaxing weekend at the beach, and that was about as much of a treat as I needed.  Also, as a congrats on the end of treatment my family sent me 18 Magnolia Bakery cupcakes (my favorite!) to my office on my last day of radiation.  And I don't mean to be selfish or anything but I have not shared them... I am savoring every one!

Here's the first one I ate (mmmm coconut), about 2.5 seconds after they arrived:

Now, as I said just because radiation is over doesn't mean that the side effects instantly disappear.  At my discharge session with the nurse she told me the fatigue will start to wane and every week I will feel better and should feel totally back to normal within a month, if not sooner.  Actually, I think it was more like a week because it's now 11 days since my last treatment and I feel pretty good and am not really noticing the fatigue anymore.

She also told me to avoid getting sun on the affected area at all costs.  Which is kind of a bummer since it is the height of the summer and all.  I can still go to the beach, of course, I just have to make sure I am covered up, so the last couple weeks I have been wearing my new rash guard or a t-shirt to the beach.  Not really the look I usually go for on the beach (especially since I just bought two new cute coverups - ugh!), and I'm not loving the farmer tan I've developed, but I guess it could be worse.

Here's a picture of me and Claire sitting by the pool on Fourth of July weekend:

Dr. Evans also said that as the area heals, it will actually get MORE itchy before it subsides, kind of like how a scar itches when it's healing.  He was right, and I did have more itchiness in the week following my last day, but it seems to have subsided now.  The area is a little dark (which he also told me to expect) and you can actually see a couple lines on my skin dividing the treated area from the untreated area - kind of looks like a tan line.

Radiation

When last we left off, I had just had my radiation planning session and was waiting to be called for radiation to start.  Turns out, that took a lot longer than expected - 4 weeks to be exact!  When I finally went in to start radiation, Dr. Evans said that my planning was a little "complicated" because of the radiation I had already had to my spine, which caused a delay.  I guess they had one plan set and then revised it.  Well, I guess I'd rather have it right than rushed!

I started by going in after work the day before treatment would start, so they could take some scans.  This was pretty quick and I was in and out in about 30 minutes.  However, they weren't able to get all the scans they needed because one of the machines was being a little wonky, so they told me they'd get the rest of the scans the next morning when I came in for my first treatment.

My first actual treatment day was Tuesday, May 17th.  I went in for the first of my daily appointments at 8:45am (originally they wanted to schedule me for a daily 7:15am appointment - eeks!  Luckily that idea was squashed because there was no way I'd be able to wake up in the 5's every day and then make it through a whole day of work without turning into a zombie).

I knew it would be a little bit of a longer appointment because of the scans they couldn't get the day before, but I figured that the first set of scans were pretty quick and I knew treatment itself wouldn't take long, so I didn't think it would take long enough to start bothering me.

Um, I was very wrong on that account.  I ended up having to be on the table - in the same position with my right arm over my head and strict instructions not to move - for about an hour and 15 minutes.  I didn't really have any sense of time since there was not a clock in my sightline but I can say that at least midway through it started to get pretty torturous.

It doesn't sound like it would be so bad - after all, you are lying down the whole time.  But you try lying down with your arm over your head and see how long you can stay in the same exact position without moving before your arm falls asleep, then becomes really sore, and then you start thinking that you are never going to be allowed to move again - ever.  Basically, it sucks.  I'm not ashamed to admit that there may have been a couple tears by the end of it.

The radiation techs kept apologizing and saying they they knew I'd  been there for a long time, that the first day is always the longest and it wouldn't be like this every day, and they kept me informed on how things were going.  After they took my scans, the doctor had to review them.  After he reviewed my scans, there was one thing he wanted Physics to double-check, so we had to wait for them to review my scans.  Once that happened, THEN I had to be treated.  So all of this took a lot longer then I think anyone expected. 

Once the radiation techs get you into position, they don't want you to move because if you do then they have to reposition you.  So while I don't blame anyone for the unpleasantness, I do think it would have been the lesser of two evils (for me at least) if they'd allowed me to relax (and move!) while we were waiting for the doctor and physics to review my scans, and then reposition me before treatment.  But that is just my two cents.

I had flashbacks to my first spine radiation treatment, which was also over an hour and pretty unpleasant after awhile.  After that treatment, the nurse practitioner gave me a prescription for Ativan (kind of like a Xanax) to relax me before treatment, which helped a LOT for my second spine radiation treatment. If I had known how long the scans + treatment would have taken, I'd have taken one!  Of course, hindsight is always 20/20.  And going to work afterwards would have been pretty interesting.