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.

The "Results Show": All Clear!

Well, as the title of this blog post suggests, my scans were ALL CLEAR!  This means there is currently no evidence of cancer in my body - WOOHOO!

This moment has been a long time coming.  It's the first time since my diagnosis 15 months ago that I've been able to say - with documented medical tests to back me up - that there is no active cancer!

And while these results were what we expected and I tried not to worry too much about my test results, it obviously came as a huge relief nevertheless.

The tests themselves went fine on Tuesday - I know the drill by now so it was the same low-carb diet on Monday, then I got to the testing place bright and early at 8:45am on Tuesday morning.  First up was three spine MRIs - thoracic, cervical and lumbar.  They were all separate tests - about 20 minutes each - and luckily they wheeled me out of the machine in between so I could move around a little before going back in.

Then I moved on to the PET/CT scan.  I had dutifully followed my low-carb diet the day before, and as usual they put in an IV first (this had to go in my arm because the contrast is made of glucose so can clog the port), then gave me my oral contrast "milkshake" (I chose vanilla this time), then I sat in a little room for about an hour.  I snapped this pic of the sign on the door:

Inviting, isn't it?

Then I was called in to the scanning room where I was belted on to the table, injected with the CT contrast, and then into the scan machine for about 30 minutes.  I think I dozed off at one point - again!  There's something about that PET/CT machine that makes me sleepy.   I guess I would feel the same about the MRI machine if there wasn't all that loud clanging going on during that test.

I was done around 1:30pm and then had to head over to the hospital to get blood drawn in advance of my radiation planning session on Friday.  A busy day, but it was relatively uneventful and smooth.

On Wednesday, I went to see Dr. Sara for my test results.  He told me they were all clear - there was nothing in the breast, nothing in the liver, nothing in the spine (the two healed spots we already knew about were unchanged).  He said there was really not much to talk about since it was all clear!  My next set of tests will be in about 4 months - in August.

It's important to note that although a clear scan is amazing news, it doesn't necessarily mean that every last cancer cell has been eradicated from my body.  There is no way of knowing that - well, I guess unless the cancer either comes back or it doesn't.  I will always be at risk of a recurrence for the rest of my life and no one will ever be able to tell me that I never have to worry about the cancer coming back, becuase there is always that risk.  But, that is why I will have scans every four months or so at least to start, so that if there ever is evidence of a recurrence it can hopefully be caught early and nipped in the bud.

Here's a picture of Dr. Sara and me right after he told me the good news:

Treatment has not changed - Herceptin every three weeks and of course radiation will be starting soon.  I also saw Dr. Rosenbaum Smith this week for my regular follow-up and everything was AOK there too!  My next breast checkup will be in July.

On Friday I went to my radiation "planning" session.  I have been through this before with my spine radiation so I pretty much knew what to expect.  My friend Kim was able to come with me to this appointment and they even let her come back to the CT room while they got things started, so she served as resident photographer.

Here's a picture of the CT machine:

And here's a pic of my feet on the scanning table.  Aren't my shoes cute?  I try to go to my cancer treatments in style!

First the tech explained what would happen - first they would get me into the right position and make a mold (that blue thing in the first pic is what eventually became the mold) that I would lie in each time to be sure I'm in the same exact position for each session.  I wondered if they could use the mold I had last time but the answer was no - and in fact they use a different kind of mold for the breast radiation than they did for the spine radiation for some reason.



After the mold was made and I was in position, they would do the CT scan, and then they would do some planning and finally I would get my new tattoos and be on my way.

It all went as planned and took a little over an hour all together - not too bad.  I had to lie with my right arm above my head and it started to hurt after awhile.  When I was finally able to move it my arm had totally fallen asleep and I couldn't feel it at all - it kind of flopped off to the side.  Such a weird feeling!  But then it quickly came back to life.

I also saw Dr. Evans who told me again how all my scans were clear and the results were the "best possible outcome".  Even though I already knew the results, I never get tired of hearing them!

They were able to use some of my existing tattoos so I only had to get four new ones, which was nice.  Now I have a total of 11 tiny blue dot tattoos.  Or as I say, they are all of the "world as seen from space" (a reference to an old Friends episode)!

Radiation should start in 1-2 weeks - they will call me when the planning is done and they're ready for me to come in.  I will have to go every day, but it will be a short treatment - just a few minutes hopefully.  I will see Dr. Evans once a week - on Mondays.

I know the radiation drill already because Mom is still going through her radiation treatment, but should finish on Friday!

Now, I have a week "off" from treatment before my next Herceptin on April 27th and as I wait for radiation to start.  I think I'll just revel in my clear scan results until then!

Sad/Happy

This blog post starts off on a somber note.  On March 29th, my Uncle Bob passed away of cancer at the age of 59.  He was diagnosed with cancer of the bile ducts in late January.  A mere two months later, he was gone.  He is missed by his many friends and family.

Besides being yet another blow - the worst one yet over the last year - to my family, it was also a stark reminder of how cruel, ruthless and unforgiving this disease can be.

Besides being sad for the loss of my uncle, and for my Dad, who lost his younger brother, inevitably it also makes me think about my own cancer diagnosis.  And while there may have been a shred of comfort in the fact that my uncle had a very rare kind of cancer that I do not have; cancer is still cancer. 

And then two days later I found out that the woman who runs the community programs at my breast surgeon's office passed away of breast cancer.  So there goes that shred of comfort.

As evidenced by my last few blog posts, I've been doing fine over the last few months with no side effects to speak of.  In a lot of ways, I live my normal life, with just a few more doctor's appointments and treatments than my fellow 32-year-olds.  And while the fact that I have cancer is always with me - always there when I wake up in the morning and constantly in my thoughts - I've learned to live with it.

But then something like two cancer deaths in one week kind of throws you for a loop and reminds you that this cancer thing is SERIOUS BUSINESS.  It really sucks, to put it bluntly.

In other news, on March 23rd I had my last chemo treatment, i.e. my last Navelbine treatment.  I didn't even know until I showed up that day that it would be my last Navelbine, but Dr. Sara said that it had been six months, and so he was taking me off the chemo drug.

However, I will stay on Herceptin for another 6 months, maybe more.  As he's said before, my case does not fit into any of the "neat categories" of cancer diagnoses.  Typically, when someone is diagnosed with Her-2 positive cancer, they are on Herceptin for one year.  The reason for the "one year" is simply because that's the length of time they have research on.  It could be that less than one year provides the same effectiveness; it could be that more than 1 year provides longer-term effectiveness.  We simply don't know because the drug hasn't been around 25, 30 years to know the long-term benefits.

Now, in cases where patients have active metastatic disease (i.e. the cancer has spread to other parts of the body and is still active in those other parts), their Herceptin treatment is determined by how the active tumors are responding.  If they keep shrinking on the Herceptin, they stay on it; if not, they may be taken off the drug.

Of course, MUGA scans are the other determining factor in treatment length, as someone whose heart muscle is being weakened by the drug will be taken off it, at least temporarily until heart strength is regained.

However, I don't fit into any of these categories.  Yes, I have metastatic disease, but it's not active (at least we don't think it is... more on that later).  So what to do?

Well, Dr. Sara says that there is really no reason to take me off the Herceptin.  It's a relatively quick treatment and doesn't have any side effects (except for the heart muscle thing which has not affected me), so why not keep me on it?

My response to this is:  Fine by me!  I will gladly get Herceptin for the rest of my life if there's even a shred of a chance it's keeping me from a recurrence.

So, now that my chemo is complete, this means it's time for another PET/CT scan.  Although all evidence of "active cancer" has presumably been eradicated from my body - the active cancer in my breast, lymph nodes and liver removed by surgery; the active cancer in my spine already showing as healed when it was discovered, and then also treated with some "insurance" radiation - we won't really know how things look until my next scan.

It's not my liver or spine that Dr. Sara is necessarily worried about... it's the fact that I had 8 out of 11 lymph nodes still affected after surgery.  This tells him that my cancer is a cancer that likes to move.  So the danger is not necessarily that it will start growing again in places where it's already "landed," but that it will show up in new places.

My scans are set for this Tuesday, and I will get the results the next day, on Wednesday.

I am pretty optimistic that my scans will be clear, but I also remember that last time my results suprised us all when those two little spots on my spine were discovered.  So you never know.

Now, besides getting scanned again, the end of chemo also means the beginning of radiation.  This Friday, I will be going for my radiation "planning" session, where I will be getting more tattoos and will find out more about this next stage of treatment.

As part of my "day of tests" on Tuesday, I will also be getting an MRI of my spine as a follow-up to my spine radiation last fall, so hopefully it will show what we expect - that the combination of chemo and spine radiation has fully healed those two little spots on my backbone.

On top of all of this, it's also time for my 3-month checkup with Dr. Rosenbaum Smith, which is also set for Wednesday, just before my "results show" appointment with Dr. Sara.

Whew - it will be a busy week!

OK, time for some comic relief.  First, as you may remember my friend Amanda's comment over a year ago about how many Mardi Gras beads she will need to give me thanks to all of my "boob flashes" inspired my little sidebar tallying both the boob flashes and needle sticks.

Well, true to her word, sure enough a couple weeks ago she presented me with a string of beads for every boob flash I've had over the last year - 112.  In case you're wondering, here's what 112 Mardi Gras beads look like!

Haha - thank you Amanda!

Now, secondly, while this is totally not cancer-related in the least, last Saturday, April 2nd was my niece Claire's 1st birthday!

Here is a picture of Claire and me on her big day:

And here's another picture of Claire in her party dress:

I think my sister Sara put it perfectly when she said that Claire is "our sunbeam in this cloudy, cloudy world." 

Happy Birthday to sweet Claire!

Keep on Keeping on...

Things are still going smoothly with treatment - with just about one more month of chemo to go, I STILL have no side effects and still feel perfectly fine.

In fact, a few weeks ago I finally mustered the courage to go back to the gym.  It was not nearly as scary as I thought it might be.  My two favorite forms of exercise are running and kickboxing (I belong to a kickboxing gym), and to get back into shape I decided to start with running.  I didn't know exactly what to expect since it had been about year since I'd done any kind of exercising to speak of.

So, even though in the past the minimum run I would do would be about 3 miles, this time I told myself to try to make it to just 20 minutes, and to go as slow as I needed to.  I made it to 20 minutes, and it felt great.  It wasn't nearly as hard as I thought it would be, and it felt really good to be running again.

The next hurdle will be taking a kickboxing class - they are pretty intense so I'm going to give myself a little more time on the treadmill to build up my stamina, but I'm looking forward to the day when I can get back to the bag.  I can see myself picturing the word "cancer" on the punching bag and I think that will give me the motivation I need to hit as hard as I can!

A couple weeks ago I had a routine MUGA scan - this is the test that measures the strength of my heart muscle, to ensure that the Herceptin is not negatively affecting my heart (since weakening the heart muscle is a side effect of the drug).  The test went the same as always.  My techician was Igor, who when he introduced himself said, "My name is Igor - it sounds scary but really I'm a nice guy" - ha!

For some reason for this test he could not use my port, so he drew blood from my arm.  Then, I waited about 45 minutes while my blood was being treated with some kind of radioactive substance, and then the blood was put back in me and I was under the scanning machine for about 30 minutes.

I got the results the following week when I saw Dr. Sara, and they were just fine.  He said my MUGA result was a 68 - meaning my heart pumps 68% of the blood up into the aorta.  Anything greater than 50 is normal, so that is good!  Not that I was worried.  Especially after I'd started running and didn't feel abnormally winded or anything I figured my heart was working just fine.

Mom has been doing well in her fight too.  She started radiation last week, and now goes every morning.  The treatment itself takes only 6 minutes.  Before she started Dr. Sara reminded her that radiation can cause fatigue and to take it easy if she starts feeling more tired than usual.  He said not to use me as an example of side effects since I am the exception to the rule when it comes to side effects these days!

So, as I said I have about another month to go on this chemo.  Let's hope my streak of no side effects keeps up.  I have also been lucky enough to have not gotten sick - meaning no flu, no stomach virus, not even a cold - since my diagnosis, despite the fact that chemo makes you more susceptible to infection.  So here's hoping I can keep that streak going too!

Status Quo

Ok it's been awhile since my last post but I have a good reason... I was on vacation!  (Well, not for the whole time - only for a week, but still.)  I went to the Caribbean, where it was sunny and warm and where there was NO SNOW!  Here is picture of me in St. Lucia:

It was really nice to just relax for a week and soak up the sun (of course I was very diligent about putting lots of suncreen on my scars).  But all good things must come to an end so after my week it was back to reality...

Luckily things are still status quo with my treatment.  After four months of chemo, I have still not experienced any side effects - my blood counts have been good every week and I don't have any of the numbness or tingling in my fingers or toes which is a common side effect of the drug I am on.  Dr. Sara said that he tends to prescribe Navelbine (my current chemo drug) a lot - more than his colleagues - and he's very pleased that I haven't had any side effects and that we haven't had to pause treatment even once to wait for my counts to come back - especially since I am getting a full dose; no baby chemo doses here!

I also passed the one-year mark of the day that I was diagnosed: January 14th.  Coincidentally, I spent part of the day getting a mammogram, as it was time for my yearly screening and my 3-month checkup with Dr. Rosenbaum Smith.  The mammogram was only of the left side, since you can't mammo a tissue expander, which I of course still have on the right side.  My mammo was 100% clean, so that was great to hear!  Dr. Rosenbaum Smith said everything looks good.  I will go back in 3 months for my next checkup.

My Mom and I actually had mother-daughter breast surgeon appointments that day since she had her follow-up with Dr. Rosenbaum Smith too.  Things are going well with her treatment as well - she did have to go in for a follow-up surgery because the pathology results from the first surgery showed a margin that was a little too close for comfort.  But the second surgery went smoothly and the margins were clean.  Now she is waiting a few weeks for it to heal completely before starting radiation.

I also had a follow-up appointment with Dr. Evans, my radiation oncologist, this week.  He said that everything looks good, and that it is time for me to have a PET/CT and MRI of the spine soon, as a follow-up to the radiation I had in September.  I did have a bone scan back in December that was clean, but since it was the PET/CT that first detected the spots on my spine, that test should be even more definitive.  Since I still have 2 more months of chemo, I will have the tests after my last treatment in order to get the best and most accurate result.

I am still on schedule to have radiation to the breast after chemo, and Dr. Evans said that I will need to wait 4-6 weeks after my last chemo treatment before my first radiation treatment can begin.  This is just to make sure that all of the chemo is out of my system.  So, it's looking like radiation won't start until the end of May/beginning of June, and will last for 6-7 weeks.  Then, I will have to wait about 3 months for the area to fully heal before I can have my follow-up reconstructive surgery to get the tissue expander removed and the implant put in.

So I still have several months of treatment ahead of me, followed by more reconstruction, but things are going well and I can't really ask for more than that!

Really, World?

This world is unpredictable.  No one can argue that.  Almost one year ago, I could never have predicted that at the age of 31 I would be diagnosed with advanced breast cancer and spend a good chunk of 2010 in various doctors' offices, in the infusion suite, in hospital beds recovering from not one but two surgeries, and even a stint on the radiation table.

But even after all of that happened, still, I couldn't predict what would come next: my Mom was diagnosed with breast cancer too.  I'll give you a second to let that sink in.

Are you back?  OK, good.  Yes of course I am totally serious because who in their right mind would joke about a thing like this.

The good news is that thanks to regular mammograms, it was caught super early (stage 1) and her prognosis is very, very good.  The "suspicious tissue" was found on her annual routine mammogram and she was advised to get a sonogram for further testing.  The sonogram results led the docs to advise a biopsy, and that is when she called Dr. Rosenbaum Smith's office.

She got in right away and Dr. RS was even able to arrange for her biopsy to take place that afternoon right after her appointment.  Results came back two days later: cancer.  I was actually walking out of the hospital after my own chemo treatment when I called my Mom to tell her how it went (fine, as always) and that's when she told me.  It was two days before Christmas, which also happens to be my Mom's birthday.

Less than two weeks later, she had an out-patient lumpectomy which went very well.  Her lymph nodes were removed and examined and initial tests showed no signs of cancer (i.e. no signs that it had spread beyond the breast).  Next step: radiation.  She will probably be done with her radiation before I even start mine!

Of course, it came as a shock to our family, but knowing it was caught so early (her spot was 4mm, vs. the 5cm+ mine was) and that she had a tried and tested team behind her made the blow a little easier to take.

Also, Dr. RS does not think that our cases are related at all - she thinks we are just having a crappy year.  Remember, only 7-10% of all cancers are hereditary, which means 90% or more are totally random.  If I had tested positive for one of the known breast cancer genes, then of course it might be hereditary, but I didn't.  Of course, as we've known all along there's a chance that we have some breast cancer gene that hasn't been discovered yet, but there's obviously no way to know that now.

It's funny, but I think that my Mom being diagnosed would have been a lot scarier if I hadn't gone through what I have this past year.  For one, we all know a whole hell of a lot more about breast cancer than we did a year ago, so we all came to it with a base of knowledge.  Secondly, as I said, there was none of the stress about which doctor to call and where she would get treated - we knew exactly who to call.  I've said it before but it bears repeating: I feel so lucky that I have the medical team behind me that I do, and that I'm being treated in a "one stop shop" place so my doctors all communicate with each other and know the latest on my case before I even see them.

In fact, when I saw Dr. Sara a week after my Mom's diagnosis, he already knew.  He was very reassuring and even praised the radiologist who caught it on the mammogram, since he said something that small is easy to miss.  My Mom actually has an appointment with him next week, since she will probalby need to go on a drug post-treatment to help prevent a recurrence (and also to verify the no-chemo recommendation once we get all test results back from her surgery).

Luckily, this news didn't put too much of a damper on the holiday, and we had a great Christmas with 9-month old Claire.  Here's a picture of me, my Mom and Claire on Christmas Day:

Meanwhile, my treatment is going great.  At my last appointment, Dr. Sara said he is really very pleased that three months in (about halfway through chemo), I STILL have no side effects - no neuropathy, no nothing.  He is also very pleased that my blood counts have remained good, so we haven't had to have any breaks in treatment to let my counts return to normal.