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.

Surgery Day

Hello Emily Supporters! This is Sara, Emily's sister, writing in to report that Emily is doing great after her mastectomy today. The surgeons said she tolerated anesthesia just fine and that the surgery went just as planned. Our parents have been able to visit with her this afternoon and she has already been up and walking. Her pain is under control and she is actually a little bit bored! As long as she is comfortable she will be discharged tomorrow and will go to our parents' house to recover. Thank you all for the well wishes and all the supportive emails, text, etc. I know it means a lot to her to have such a supportive cheering section to help her get through this process!

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.