Bone Scan Results - Extended Edition

When I think back to the events of last week, it all seems to be a bit of a blur.  My thoughts were almost entirely consumed by the news of these suspicious spots on my spine and what it could mean, but I also had to make room in my brain for pre-surgery testing and my last week of work.  Not to mention that I decided to refinance my mortgage (hey, interest rates are low!) AND got a toothache along with everything else.  I am not making this up, I swear!

My marathon of trips to the hospital (I graced Roosevelt Hospital with my presence no less than 5 times in three days) started on Tuesday.  First, I had a pre-surgery appointment with Dr. Samson, my plastic surgeon.  Dr. Samson's PA (Physician's Assistant) first had me sign several consent forms, then she went over my pre- and post-surgery instructions.  Pre-surgery instructions were mostly just to avoid certain medications (like aspirin) and don't eat anything after midnight the night before surgery.  Easy enough.

After surgery, I will have surgical drains - at least one, maybe two - that I will need to take care of.  I asked to see what they look like.  They are long thin tubes, part of which will be in my body, coming out of my underarm area.  The end looks like a hand grenade, and that is where the fluid collects.  I have to measure my "output" every day since that's how they will decide when it is time to remove them.  But typically, they stay in for about a week.  I think this is going to be a major drag because I'm not allowed to shower when I have the drains in.  No showering for a week???  I think I'll hold all visitors until they are removed!

They also recommend that you either safety pin the drains to your clothing or put them in a fanny pack.  So I will surely be styling after surgery with my G.I. Jane haircut, my button-down shirts and my fanny pack!  I will have to fend off the fashion photographers I'm sure.

After getting all of my instructions, Dr. Samson came in, did an exam and went over the surgery again.  Since I opted for an implant over the TRAM surgery, this means that I will have a temporary tissue expander inserted which will gradually be filled with fluid over a few "expansion" sessions until it reaches the desired size (i.e. until it matches my left side; I am not going to go for the Picasso look with one huge boob and one normal-sized one).  I also asked to see the tissue expander - it basically looks like a deflated implant with a medi-port in it, through which the expansion injections will occur.

Dr. Samson said when I wake up from surgery I will have some semblance of a "breast mound" but it won't be the same as the left.  So I guess I will be rocking the Picasso look for a little while.

Since I will need radiation following surgery, I will not be getting my permanent implant for quite a while.  As Dr. Samson had explained during my initial consultation, there is a risk that the radiation can damage the tissue, and so my "exchange" surgery - when they take out the tissue expander and put in the permanent implant - won't happen until at least 3 months after radiation is complete.  But that is OK as there is no real drawback to the tissue expander (especially once the size of it matches my left side!).

The PA gave my two prescriptions - for a painkiller (Vicodin) and an antibiotic - to have filled before surgery so I'd have them when I needed them, and then I was on my way.

The next stop was Dr. Rosenbaum Smith's office, to get my pre-surgery testing done.  Again, I had to sign a bunch of consent forms.  I was told to arrive at the hospital at 6:15am on the day of surgery and then I was asked if I wanted a private room.  Dr. RS's surgery scheduler, Jancy, produced a brochure that looked exactly like a hotel brochure (I know, since many of my clients are hotels) showing stylish rooms and advertising "south city views".  It all sounds very nice, but for $400 a night (during which I hope to be too drugged up to be able to enjoy any kind of view), I didn't think it was necessary.  I am just going to hope that I either have a quiet roommate or better yet, no roommate at all.  Maybe since it's a popular vacation week there will be a lot of doctors on vacation and so not as many surgeries scheduled?  One can only hope.

Bone Scan Results

This is just a quick post to say that MY BONE SCAN RESULTS WERE NEGATIVE!!!  Wahoo!

This means that there is no sign of active cancer in my bones.  Most likely, those spots that showed up on the PET scan were very small cancer spots that the chemo has now healed, although there is no way to know for sure if that is indeed what it was.

Even though we didn't know about them until after they were healed, it is still good that they were found, because now we can give those spots extra treatment (as a precaution) in the form of radiation.  In addition to radiation to the breast, I will also now get radiation to those two small spots on my spine as well.  It will be the new technique Dr. Sara mentioned last time that is extremely targeted and very precise and does not really have side effects.

I will write a longer post about my experiences over this past week soon, but right now I am too emotionally drained and exhausted to write any more.

But I do want to say thank you to everyone for all the amazing support and prayers I received this week.  All the phone calls, texts, emails, blog posts, etc., went a VERY long way in getting me through what was probably one of the hardest weeks of my life.  So thank you!

Curve Ball

Friday morning I had an appointment with Dr. Sara to find out the results of my PET/CT scan.  I think everyone - Dr. Sara included - expected that the results would show that the cancer in my breast and liver was no longer "lighting up" on my scans.

My parents and I were placed in an exam room and Dr. Sara came in shortly after.  He explained that he only had about 15 minutes to talk to us because he had to get to a conference.  I knew this already since his admin James had called me the day before to ask me if I could come in an hour earlier than my originally scheduled appointment time for this reason.  He apologized for not having more time, and said that he needed our full attention and concentration and that he would be very clear.  At this point I knew the news was not as simple as we all expected and my heart started pounding loudly in my chest.

Then he told us that the cancer in my breast and my liver was no longer lighting up on the scans. Of course, this is a good thing and what we expected.  However, the scans showed something else we did not expect: two small spots on my vertabrae.  When I heard this, my mind briefly flitted back to a time earlier this year when I'd heard - I think from Dr. Sara though I don't entirely remember - that when breast cancer has spread to the bones, it is usually considered incurable.  But I did not let my mind rest there, because Dr. Sara was still talking and I needed to hear what he had to say.

He said these are not new spots.  It appears that they have been treated by the chemo, which makes the bone denser and therefore they more easily appear on the scans.  He said he would not have expected any radiologist to find these small spots back in January.  He explained that the tests I had scan 3mm slices of my entire body.  I get the impression that finding these tiny spots would have been like finding a needle in a haystack.  But, now that the denser bone is causing it to show up, they knew exactly where to look and so they pulled my scans from April and January, and sure enough, they were there.

So what now?  It is not a clear cut answer by any means.  Dr. Sara presented my case at tumor board the day before, and, unlike the time he presented my case after the cancer in the liver was discovered, this time there was no consensus on what the course of action should be.  Many doctors would see evidence of the cancer in the bones, consider me incurable, and then change the course of treatment, possibly recommending that I not even go through surgery since the goal would no longer be to cure me, but only to treat the cancer and keep it at bay as long as possible.

Awaiting Surgery

It has now been three weeks since my last chemo treatment, and I'm currently in that period of "getting my strength back" before surgery.  So far, so good.  I feel pretty normal, and even went running again this past weekend.  Granted, I could only go a little less than 2 miles before I decided to walk - any further would have been pushing myself and I just didn't think it was necessary - but I was still pretty proud of myself for running at all.  I think I'll try again this weekend.

This past week I spoke to both Debra (Dr. Sara's nurse practitioner), and the nurse from my insurance company who calls me periodically to see how I'm doing (she's the one that sent me the cancer cookbook early on).  Both of them reminded me that the effects of chemo can last months, so it's totally normal if I don't feel quite like myself yet.  It got me thinking:  the truth is that I THINK I feel normal now, but what if I've forgotten what "normal" really feels like?  Oh well, it doesn't really matter.  I think I feel pretty good now (maybe still a little more tired than usual), so if I feel even better in a few months, well all the better for me.

Of course, surgery is right around the corner.  Only two weeks from today.  I have had months to "prepare" for it, but how do you really prepare?  I'm going to be unconscious after all.  I think I'm about as ready as I'll be.  I have never had any major surgery before and have never had anesthesia, so I'm a little uneasy about the unknown.  As much as I've talked to and read about people who've had surgery, I still don't really know exactly what to expect.  But, a lot of people have told me the anticipation is usually worse than the reality, and so I am trying to keep that in mind and I hope they are right!

I have one irrational fear when it comes to surgery.  I know I should be more worried about valid things like pain, but the truth is that I am a little scared of "anesthesia awareness," which is when patients wake up in the middle of surgery and can hear their doctors talking, etc., but most often can't speak up to say anything.  That sounds absolutely terrifying to me.  Ever since I read a news article about this happening to someone years ago, it's always stuck in mind as one of the things I'd be most scared of if I ever needed surgery.  And, of course, it happened on an episode of Grey's Anatomy this year, so that didn't help matters!  But, I've been told that it's very rare, and most often if it does happen the patient doesn't even remember it afterwards.  So, I've been trying to remember that and I think it's working.  I haven't been thinking about it too much lately (luckily).

I have been thinking a lot about how my body will never look the same after July 7th.  It's a big part of that "unknown" I'm facing.  Of course, I've seen photos of what reconstructed boobs look like, but I think it will be a different thing completely to look down and see it on my own body - the one I've had for 32 years.  Granted, in January my right boob started looking a little different thanks to the cancer, but the chemo has killed so much of the cancer that it looks pretty much back to normal now.  It's a little sad, of course, that just when it gets back to normal it has to come out, but I won't be holding any farewell parties for my boob.  It's necessary that it be removed and so it will be.

In addition to the mental preparation, I've also been getting ready for surgery and recovery from a practical standpoint.  Next Friday, July 2nd is my last day in the office before I go on medical leave for 4-6 weeks, so I've been busy getting things in order and making sure my co-workers have all the info they need to cover things while I'm out.  Two days before my surgery - July 5th - will be 10 years to the day that I have been in my career, and I don't think I've ever been out of the office for more than 10 days or so.  So it will definitely be weird to be out for several weeks.  I like my job so I know I will miss it, and I'll probably get bored pretty quickly, but I'm going to do my best to relax so I can recover quickly and get back to it.

Completing Chemo

I can't believe it's been a whole month since my last blog post! The reason for that is that not much was happening in Cancerland, which I guess is a good thing. After Chemo #5, I had the usual fatigue, which was a little worse than the previous treatments (to be expected since chemo is cumulative) but still not unbearable. I kept up my streak of not missing any workdays other than treatment days and after a few days I felt fine again.

I even went on a business trip to L.A. in late May - my first time on a plane since January (for me, that is a long time). It felt good to travel again and do something that was such a key part of my pre-cancer life. The truth is that largely, my day-to-day life has not really changed THAT much since my diagnosis, but there are some things like traveling, exercising, doing my hair, etc., that have been missing and as trivial as some of them are, I still miss them.

The trip was great and the only "cancer experience" I had was going through security at LAX. I wore my "chemo caps" on the plane because I thought I'd be more comfortable wearing a hat rather than a wig for such a long flight. But in LA, after I put my luggage on the conveyor belt and walked through the metal detector, the TSA agent asked me to remove my hat. I gave her kind of a blank look and said "Wha-at?" She repeated herself and then I said awkwardly that I didn't have any hair, and she quickly realized the situation and frantically said that was fine, I didn't have to take it off and she could just pat me down. So she patted my head (which was a little weird, and what she thought I could possibly hiding under there is beyond me) and then sent me on my way.

The weekend after my L.A. trip was Memorial Day weekend (also known as my birthday weekend), and my family and I spent it at the shore, as we do every year.  Since chemo is coming to an end, I have started thinking about when my hair will start coming back.  Dr. Sara said it would probably start coming back about a month after my last treatment, though my Chemotherapy and You book says it takes about 2-3 months for it to start coming back. 

In any case, I had still never completely lost all of my hair, though it was so thin that I felt like without a wig, hat or scarf to cover my head, I looked like a 70-year-old man with a bad combover.  In addition, the hair that did remain was not my normal, healthy hair; it was very thin and brittle.  My sister called it "troll hair" because I could make it stand upright on its own, just like those little troll dolls that used to be popular.  So when I started thinking about my hair coming back, I started imagining new, nice, healthy hair commingling with the old troll hair on my head and that did not conjure a pretty sight in my brain.  So, I decided to go ahead and shave my head.  My brother-in-law Kevin graciously volunteered to do it and so he borrowed his dad's beard trimmer and the day after my birthday, after a long day at the beach, he shaved my head.  Here's a picture of Kevin at work (yes that is my goofy sister Sara in the background):

I think he did a great job, don't you?  I know that the head shaving party can be an emotional event for a lot of cancer patients but it was not so for me because I had already lost so much hair and had already been living with wigs, etc., for so long.  And now that I have a shaved head I kind of wish I'd done it sooner.  I'm much less embarrassed of my G.I. Jane look than I was of the "troll hair."  Not that I'm going to start ditching the wigs and hats and "go commando" on my head, but if for example a hurricane-force wind suddenly came along and blew my wig off, well, it wouldn't be the end of the world.

Not So Fast

Just when I was starting to get used to the idea of the May 20th surgery date... Dr. Sara throws me a curveball (not a bad one though)!

On Friday morning, I had an appointment with Dr. Sara, and also a Herceptin treatment.  After my usual physical exam (three boob flashes), we talked about my test results.  Dr. Sara said he'd just been on the phone with the radiologist who examined my scans, and the radiologist said there was a "more than 80% improvement" in the breast, and he also said that the cancer on the liver is no longer showing up as "active" (which we knew).

Dr. Sara said he was extremely pleased with the results (and so am I!).  Then he said that because the chemo is working so well, and because I am tolerating it so well, he has decided that instead of sending me to surgery now, I will have two more rounds of chemo to try to reduce the cancer even more.

This is NOT a setback - again, it's because I've had such a tremendous response to the chemo.  In the beginning, Dr. Sara had said that the goal is to go to surgery with NO cancer if possible.  And because I had such a large mass, it's not something that can be knocked out in 2-3 treatments, so it's totally normal to go 6 rounds.  Plus, relatively speaking my side effects have been pretty manageable - I still have not had to miss any days of work because I don't feel well due to chemo side effects.  This all played into Dr. Sara's decision to give me two more rounds of chemo before I have surgery.

So now, I have a little more time to prepare mentally for surgery, which will not take place until late June or early July.  And although two more rounds of chemo means more fatigue, dry mouth, and fogginess side effects (which may get worse since chemo is cumulative), and although this means I will have to wait a few more weeks for my hair to start growing in, I am not disappointed in this change of plans.  Instead, I am happy that my test results are so good and my side effects have been manageable enough to allow for a more aggressive treatment.  I'm all about blasting the cancer with as much ammunition as we can.  I want every last possible cell to be killed or removed so that the chances of some of those cells lying dormant and reactivating in a few years is lowered!

And The Results Are In...

Today I saw my breast surgeon Dr. Rosenbaum Smith, and found out my test results.

The spot on my liver is clear, and the tumors in my breast are about half the size they were in January.  The largest was 6cm x 4cm when I was diagnosed, and it's now 3cm x 2cm.

WAHOO!  This is obviously really, really great news, and it means the chemo did it's job.  Of course, it is what I expected, since Dr. Sara had said he didn't anticipate any surprises, but it is still exciting to know for sure!

This means that I am most likely ready for surgery, and in fact, my surgery has been scheduled for May 20th.  Unbeknownst to me, Dr. Rosenbaum Smith had already set aside the OR time when she learned my last chemo was scheduled for April 14th, since it's easier to have it scheduled and cancel or postpone if need be, rather than try to get it scheduled last minute.

So, unless Dr. Sara (who is currently traveling) sees my test results and decides for some reason that he wants to give me more chemo before surgery (not likely), this means that I am DONE with chemo!  I will see Dr. Sara on Friday morning for a Herceptin treatment and will know for sure then.

I also have an appointment on Friday with Dr. Attiyeh, my liver surgeon.  I should find out then whether this will be one surgery, or two.  If it will be an open surgery, most likely it will not be done at the same time, but if it can be done laproscopically, it may be able to be done all in one.  Dr. Rosenbaum Smith said she has a feeling it will wind up being better to do two surgeries (breast first), but I will know more on Friday.

I've also gone ahead and made an appointment with Dr. Samson, my plastic surgeon, for next Tuesday.  This is when he'll go over the surgery again and discuss the pros and cons of silicone vs. saline, the next decision I will have to make.

Speaking of decisions, over the last several weeks, I have come to the decision that I am going to have a single mastectomy.  It is just the right decision for me.  While I think that all of the reasons some women elect a bilateral mastectomy are valid, I just do not feel strongly enough about them to choose that for myself. 

I decided that I'd like to keep it natural on the left side.  Two things that played into my thinking were the fact that I will lose feeling for at least a year, and maybe forever, in my right side, and I decided that I'd rather not lose feeling on the left side if I don't have to.  Also, if I ever want to be able to breastfeed in my life, I still have the option if I leave the left side natural - a very big IF to be sure, since it's possible I won't even be able to have kids after my chemo regimen, but having a new baby in the family made me think a little more about this, and I'd like to keep that option there.

Dr. Rosenbaum Smith said the surgery will take about 4-5 hours all together (assuming it is just the mastectomy and reconstruction).  During the surgery she will also take my lymph nodes.  There are three "levels" of lymph nodes, and my case calls for the removal of all level 1 and level 2 lymph nodes.  I will likely only have to stay in the hospital for one night, maybe two.  As for the recovery, everyone is different, but most likely it will be two to three weeks before I will be able to go back to work.

Of course, I'm very pleased with this news but also a little overwhelmed that surgery will most likely be only a little more than two weeks from now!  I know I've had months to prepare, and I think I'm ready (well, I have to be since I don't really have a choice), but it still feels very soon!  At least I have the next two weeks to get the rest of my mind around it.

In other news, this past weekend was the Revlon Run/Walk for Women.  We had a GREAT day, with beautiful warm, sunny weather!  Although the day turned out feeling more like August than April, the walk was early enough that it wasn't too hot.  I got there a little early so I'd have time to fill out the signs and have them pinned to my back.  I had to visit the "Survivors Tent" for the first time, but certainly not the last, for the first one.  Check it out:

Here's a picture of our team:

And here is me at the finish line:

It was a great day for a good cause!