The Next Step

Well, look at that - I kept my promise.  After my last post came after my longest stretch ever without a post, I am blogging again less than 24 hours later - the shortest time ever between posts.  OK, I know it's all because so much has happened during the last few weeks that I couldn't fit it all into one post, but whatever.  Details, details...

Anyway, as I mentioned in my last post, in the last few weeks while all the radiation stuff has been going on, I've also had two Herceptin treatments.  The first one, back on August 25th, was the first time I'd seen Dr. Sara since my surgeries (he was traveling during my previous treatment and I saw another doctor that day in his absence).

Dr. Sara remarked on how well I'd recovered from surgery and said Dr. Attiyeh had told him he'd almost never seen anyone have to stay in the hospital for only two days after the kind of liver surgery that I had.  I said, "Well, I'm an overachiever, what can I say?"  :)

After the typical exam, where Dr. Sara and Deborah mentioned that my scars looked good - and that usually liver surgery results in a big horizontal scar that looks like a hockey stick, so I was lucky to have my vertical one - we sat down to talk.

Dr. Sara went over my the pathology results from both of my surgeries.  Of course, Dr. Rosenbaum Smith and Dr. Attiyeh had already gone over these with me, so there were no real surprises, but when I'd seen Dr. Rosenbaum Smith she hadn't had the final report yet, so Dr. Sara went over that with my parents and me.

As Dr. RS had said, there was still quite a bit of cancer left in my breast, and I did have positive lymph nodes - 8 out of 11 to be exact.  I didn't really understand the significance of the number of lymph nodes so I asked Dr. Sara if everyone has the same number.  He said no - the number can vary greatly.  Most people have at least 10, and some people have as many as 50.  And just because I only had 11 removed (all that Dr. RS had found) doesn't mean I didn't have more at one time - the cancer could have destroyed some lymph nodes along the way.

The results showed that the chemo I'd had before surgery had had a significant effect on the cancer, but not a complete effect.  Not that we expected that - we knew from my scans that there was still cancer in the breast.

One other significant thing that the pathology report did show was that 35% percent of the remaining cancer was estrogen-receptor positive.  Dr. Sara said he was very pleased to see that because it meant that he would be able to give me Tamoxifen, a drug that is given to breast cancer patients who are hormone-receptor positive for five years following treatment.  I've read that it can reduce the risk of a recurrence by up to 50%.  Now, my original biopsy results did show that I had some estrogen resceptor positive cells, but the percentage was not exactly known - it said "10-30% percent, mostly weak".  Now, we know that the percentage was high enough for the Tamoxifen to hopefully be effective.  Dr. Sara also said that this was good because the estrogen receptor negative cancer tends to be more aggressive, so hopefully that means any cancer that might remain is less aggressive (meaning slower growing).

As for the liver, just as Dr. Attiyeh had said, there was still a very small amount of cancer cells found in the liver, but it was greatly reduced from what my original scans had shown, and the part that was removed had clear margins.

Dr. Sara gave me copies of both pathology reports, and I have to say they are kind of funny and kind of weird to read.  Half of it I don't understand, of course, but there is a section where the "specimen" is described and it says things like "the specimen is received fresh" (ew) and "situated central on the skin surface is an unremarkable nipple" (well, exCUSE me!).  Also, the masses which I presume are the remaining tumors are described as "tan" and the previous biopsy site appeared "bright orange" - who knew?

Anyway, after going through the reports, Dr. Sara said that the results - especially the fact that I had positive lymph nodes - led him to decide that I should get more chemo.  There is still a risk that there could be microscopic cancer cells lurking in my body, just hunkering down until they one day decide to start colonizing.  Dr. Sara said that if these results had appeared post-surgery in a patient who had not had chemo first, they would definitely give that patient chemo.  And since we are being aggressive with my treatment and pulling out all the stops to cure me, not just treat, he recommends that I have more chemo.

This did not come as a shock to me.  During my previous Herceptin treatment, when I'd seen another doctor while Dr. Sara was traveling, I had asked if I would need to go on Tamoxifen. When I asked this the doctor and Deborah had said that that would be up to Dr. Sara - whether he would give me more chemo or put me on Tamoxifen (turns out it will be both).  It was kind of said in passing, but I caught it so I already had in mind that more chemo was a possibility.

Now the next round of chemo will not be the same as the first.  Dr. Sara said that they have to change up the drugs they give me because after a while chemo regimens sort of "run their course" and are not as effective.  It's hard to say for sure, but it's possible that either the chemo I had before had run its course, or that the cancer remaining was resistant to those drugs all along.

So, this time I will be getting a new drug (not new, but new to me) called Navelbine.  Dr. Sara said he chose this drug over some other options (including Adriamycin, which I'd read about and knew as a nasty one - it's called the "red devil" because of its red color and harsh side effects, so I'm glad I won't be having that) because Navelbine is known to have a compound effect when given in conjunction with Herceptin.  As Dr. Sara put it, Navelbine plus Herceptin is more effective together; i.e. 1 + 1 = 3, not 2.

The good news is that Navelbine is not so bad with the side effects.  I will not lose my hair again, I will not have that "icky" feeling I had for a few days after chemo last time, and I will not have the dry mouth nastiness again.  Also, I will not need any pre-meds, like Hydroxizine or the steroid Dexamethasone that I had to take last time, which helped contribute to some of the side effects I felt.

(As a side note, speaking of my hair... it has been coming back at a good pace over the summer.  Here is a picture of me and Claire on Labor Day weekend:

Not bad, huh?  As you can see, I definitely have more hair than her now! I probably never would have asked to have my hair cut this short, but I don't mind it at all.  And it makes it pretty easy to get ready in the morning which is a nice bonus!)

Getting Radiated

Uh oh.  It's been 4 weeks since my last post and I said I wasn't going to that, didn't I?  (Actually 4 weeks minus one day, if you want to get technical about it.)  Oops.  Well, this time I won't promise not to go more than a couple weeks without blogging - I'll just say that I'll TRY not to go too long between posts.  Sound good?  OK, I feel better now that that's out of the way.

Since my last post I've had: two Herceptin treatments, one appointment with a neurosurgeon, two MRIs,  one radiation "plan check", and two actual radiation treatments.  Whew!  That is a lot to catch up on, so let's get started...

When we last left off (I know, it was so long ago you don't remember...), I was waiting to hear from Radiation Oncology about when the radiation to my spine would start.  It turns out that a few things needed to happen before treatment could begin.

First, I had to go see a neurosurgeon, Dr. Cohen.  My radiation oncologist Dr. Evans just wanted me to meet Dr. Cohen and have him evaluate me before starting treatment just in case I ever needed a neurosurgeon (which freaked me out only a little).  The appointment was very easy - I didn't even have to change into a gown (one of the few doctor's appointments I've had recently that didn't involve at least one boob flash).  Dr. Cohen just asked me to do simple stuff like touch my toes, walk on my heels, etc.  He asked if I've had any pain in my back or any numbness or tingling (I haven't).

After this quick exam I went into his office where he told me that from a neurological standpoint I was perfectly healthy.  He said he considered the two spots on my spine "benign" - which doesn't mean that they were not cancer, just that they do not currently pose a threat to my spinal cord.  So that was good to hear.  He said he didn't even feel the need to order an MRI, but that if Dr. Evans did, which he expected (and he turned out to be right about that), he would take a look.  But all in all, it was a very easy appointment and I was in and out of there pretty quickly.

The following week I got a call from Dr. Evans' office that radiation would start on Tuesday, Sept. 7th.  But first, I needed to have an MRI, just as Dr. Cohen predicted.  So on the Friday before Labor Day weekend, I went to the imaging place for the MRI to my spine.  Isn't that how everyone kicks off a holiday weekend - with a medical test?  Oh, it's just me? :)

After waiting AN HOUR (at least they warned me and at least I had a book!) they finally called me.  This MRI was just like the others.  I had to lie still while the magnets clanged above me, though I had earplugs as usual, and then halfway through they gave me an injection of contrast through an IV before I had the second set of "pictures" taken.  Ever since my 6-needle-stick day I've been a little nervous about getting IVs since I know my veins are shot and I only have one arm available.  But luckily the technician got it on the first try.  Whew!

The Girl With Seven Tattoos

Now that surgery is behind me (whew!) it's time to turn our attention to the next step in my treatment - radiation.

A couple weeks ago I added yet another doctor to my repertoire when I met my radiation oncologist - Dr. Evans - for the first time.

After doing a physical exam, Dr. Evans sat down to talk to my parents and me.  He said he was already very familiar with my case, as he was present at the "tumor board" meeting where Dr. Sara had presented my situation after the two spots on my spine were discovered.  He told me that in the meeting Dr. Sara said that I was young, strong and motivated, and that he felt very strongly that these two spots to the spine should receive treatment, despite the fact that typically, a case like mine would not call for treatment to the bone.

The thing is, even though my bone scan came back negative, meaning it did not show evidence of active cancer cells, these tests are not foolproof and it doesn't mean that there are not still microscopic cells remaining even after the chemo.  Just as my PET scan before surgery did not detect any active cancer in my liver, but the pathology report following surgery did find microscopic cells, the same could very well be true with these two spots on my spine.  So we are not taking any chances and are going to blast those suckers with radiation to try to kill any cells that may possibly have survived chemo.

Of course, I will also need radiation to the breast, for the same reason.  I have always known I would need radiation, because radiation treatment is indicated in cases where the tumor is larger than 5 cm, which mine was.  And especially since my post-surgery pathology report found a fair amount of cancer still remaining along with positive lymph nodes, well it is all the more reason to blast the area with radiation too in order to kill any pesky cells that may have remained.

However, Dr. Evans said that the priority is to treat the spine first.  Unlike the breast radiation, in which I will have to go for treatment for about a half hour every day for 6-7 weeks, the radiation to the spine will take place in a total of 2-5 sessions, each of which will be about an hour or so in length.

The first spot will likely be treated in just one session, since it is not located near the spinal cord and therefore is safe to blast all at once.  However, the second spot is located much closer to the spinal cord, and so to be safe, treatment of this spot will probably take place in 2-4 sessions.

As far as side effects are concerned, Dr. Evans said that I will not feel anything during treatment - it is like getting an x-ray.  However, I may feel some fatigue as treatment goes on, and I may notice some scratchiness in my throat or lungs for a day or two after treatment.  Since one of the spots is located close to my spinal cord, there is also a very low risk (Dr. Evan said less than 1%) of paralysis.  But I am not really worried about this because the risk is so low.

I asked Dr. Evans what the "measurement of success" will be, i.e. how will we know if the radiation worked.  He said that I will have a PET scan following treatment, but because of the radiation itself can skew test results, we have to wait at least 3 months after treatment is complete before we can get an accurate reading.  Since my last PET scan did not show "active" cells, but rather two areas that appeared to have already been treated, between you and me I think we will know if the treatment worked when the cancer either doesn't come back or it does.

The first step in the treatment is to have a "treatment planning CT scan," which was scheduled for the day after my appointment with Dr. Evans.

Who Likes Liver Anyway?

Has it really been three weeks since my last post?  Oops, I guess I have been neglecting my blog during my recovery, but better late than never, right?

The truth is, a lot has happened in the last three weeks, and while recovery is going well, my energy levels just haven't been back to normal yet and I haven't really had the necessary combination of time and concentration to sit down and write until now.

So where did we leave off?  Oh right, I was just about to go in for my second surgery, to have part of my liver removed. 

The night before my surgery, my parents and I once again stayed overnight at the Holiday Inn just a couple blocks from the hospital, because I was due to arrive for surgery at 6am Monday morning.

We reported to the 5th floor Ambulatory Surgery department right on time.  Soon they called me back into the pre-op area, which I am now pretty familiar with.  They took my vitals, asked me all the same pre-op questions as last time, and asked me to change into a gown.

Then my parents were called back and we waited just a short time before the anasthesiologist came by.  She took me directly back to the OR, giving me a shower cap to put on my head along the way, and then set me up on a gurney in the hall just outside the OR doors.

She mentioned that I was very young for this surgery and went through the general plan for anasthesia.  She said once we were in the OR she would give me something to relax me (she said she's a good bartender!) and then once it was time she would of course put me completely out.

Then, someone came by to insert my IV - and they got it on one try this time, thankfully!  I also saw Samantha, who is my plastic surgeon's PA and was there to do the first expansion in my tissue expander while I was under anasthesia.  And of course, Dr. Attiyeh came by as well to see me before surgery.

I didn't have to wait long before they were ready for me and once again, I walked into the OR, trying not to look around too much, and climbed up onto the operating table.

I don't really remember much after this.  I do remember the anasthesiologist saying that she was administering the drug that would help me relax and I thanked her for this.  She said "I told you I was a good bartender!" and I don't remember anything else after that.

The truth is, I don't really remember much about the rest of that day.  I only have vague flashes of being in the recovery room.  I remember my nurse had curly brown hair, but I don't remember her name or anything else.  I remember when she gave me the clicker that I could press to give myself a dose of the painkiller they had me on, but I was too out of it to understand the instructions.  Not that they were hard - I just had to press it when I felt like I needed it, but I could only press once every 8 minutes (well, I could press the button as many times as I wanted, but it would only actually give me a dose once every 8 minutes).  This method is called a PCA - patient controlled analgesia.

I wasn't too keen on the PCA because I couldn't stay awake long enough to give myself enough doses to kill the pain.  So I would click, fall asleep, wake up in pain, click, fall asleep, wake up in pain, etc.  I kind of wish they would have just put me on something that I didn't have to think about, but oh well.

Anyway, unlike last time I did not have to wait in the recovery room for several hours for a patient room to open up.  Before leaving the recovery room, I remember the nurse expressing a bit of concern that I hadn't been pressing my PCA... but I was not even "with it" enough to think about pressing the PCA at that point.

Once I was in my room I mostly just slept.  When I did wake up, I was in pain.  It felt like I had had the absolute worst ab workout you can possibly imagine.  The most annoying part was that I couldn't take a deep breath because it hurt too much.  So when I woke up, I would instictively try to take a deep breath, then get frustrated when I couldn't, and the only way to not feel the pain was to fall back asleep, so that is what I did.

Emily is home!

I am happy to report that Emily was discharged this morning and is now home at our parent's house. She was able to go home sooner than expected! She is doing well and managing her pain. After she rests up for the next few days she'll be back with a blog post probably some time next week. Thanks for checking in on Emily!

Surgery #2

Hello Emily supporters! This is Sara again writing in to report on Emily's second surgery. Emily is out of surgery and her surgeon said everything went according to plan. Our parents met with her in recovery for a few minutes (until the nurses reminded them of the five minute time limit). She is in pain and groggy, as expected, and will be moved to her patient room soon. Once she is moved to her room our parents will be able to visit with her again. Since this surgery is a bit more invasive than the last, she will be in the hospital until Thursday or Friday. Thanks again for all the support and well wishes for Emily!

One Down, One to Go

I'm about a week and a half out from my mastectomy and it's already time for surgery #2, which will take place tomorrow morning, Monday, July 19th.  But now that I've been through one surgery, I know a little more what to expect. 

On the day of my mastectomy, my parents and I arrived at the hospital early - at 6:15am as requested.  We had to report to Ambulatory Surgery on the 5th floor - the same place I had to go for my liver biopsy months ago.  I signed in and took a seat with the other surgical patients and their families in the waiting room.  After a short time they called my name and I headed back and took a seat in one of the recliners in the "holding area" for surgery patients.

I got my wristband, changed into a hospital gown and then a nurse came by to ask me a host of standard questions.  Then they called my parents to come back and wait with me.

I didn't have to wait long, luckily.  Shortly after my parents arrived Dr. Samson came by to "mark me up".  He made a series of markings on my body with a purple marker - not places where they were going to cut (thankfully, because there were a lot of them!), just markings to help guide things I guess.

Then, the anasthesiologist came by to introduce herself.  She asked me a few questions then explained that I would be given a series of anasthesia drugs to keep me out for the duration of the surgery, and that they work as needed as far as duration - so once surgery is over, she can pretty much flick a switch to wake me up.  Of course, due to my anasthesia awareness fear, I asked if she could ensure I wouldn't wake up in the middle of surgery and she said that there are all kinds of monitors on me - heart, brain, etc. - that she keeps track of to make sure this doesn't happen.

I had to sign another consent form  for the anasthesia and then it was time to go.  I said goodbye to my parents and walked with the anasthesiologist back to where the operation rooms are.  Along the way she gave me one of those shower caps to put on my head to cover my G.I. Jane hair.  Then she led me to a gurney in the hall where I laid down. 

Since Roosevelt is a teaching hospital, a first-year resident was tasked with inserting my IV.  He was very determined but had a bit of a hard time... he did stick the inside of my elbow but I think he missed the vein or something because I don't think any blood came out (I'm not exactly sure because I didn't look).  The anasthesiologist came over to take a look and she took that IV out and put the IV in the back of my hand, apologizing along the way.  It really didn't bother me at all though because I am used to needle sticks!

While this was going on, Dr. Rosenbaum Smith came over all ready in her surgical scrubs and mask.  She said "fancy meeting you here" and asked how I was.  I said I was OK and she said that when I got into the OR, there would be a lot of people coming at me to put various monitors on me, but she said "don't worry, we won't do anything important until you're asleep in your happy place."  It was very reassuring to see and talk with her a bit.

Once the IV was in place I stepped down from the gurney and then walked with the doctors into the OR. I didn't look around too much because I was afraid of seeing a tray of scalpals or something that would freak me out.  But I did notice that the room was really large and very very bright - much brighter than how it looks on TV!  They asked me to climb up on the operating table and told me where to put my head.  Then I had to shimmy a bit here and there to get into the right position.  Dr. Rosenbaum Smith was right about various people coming at me to hook me up to monitors.

Then she said, "so where is the happy place you'll be going to?" and I said Bora Bora.  She said that sounded lovely and asked if I'd ever been there.  I told her that I'd been there twice since I have a client there and she said she wishes she had clients there too and that is the last thing I remember!  My parents later told me that when she came out to meet them after my surgery she told them that she thinks next time I go to Bora Bora I will need to bring my surgical consult.

The next thing I know, I felt like I was on a gurney that was being wheeled through the halls and I heard voices telling me to take deep breaths.  I felt like I was in a deep sleep and wasn't ready to wake up yet... like those mornings before school when my Mom would come to wake me up and I'd ask for "10 more minutes" (I never have been a morning person).  But then I remembered that I'd had surgery and I figured if people were trying to get me to wake up, I better listen to them.  So I made an effort to wake up and take deep breaths (even though I tried they still felt pretty shallow, but at least I was trying!).

When I woke up I found myself in the recovery room of the hospital.  I could only think of two things - one, that I really had to pee, and two, that I was really hot.  The first problem took a bit to fix - I felt like I had to pee but couldn't, which apparently is a side effect of anasthesia, but it wasn't too long before that system was back to normal.  For the second problem, the nurse took my socks off and affixed a fan to my bed to cool me down. Once these issues were resolved I realized that I did have some pain in my breast and upper arm.  The recovery room nurse, Rhea, asked me what my pain level was - I think I said 4.  She gave me a couple Percocets and they worked relatively quickly.