Tuesday, September 30, 2014

Thursday Schedule

Thursday will be a long and busy day for us...
  • 9:30am - Meet with the surgeon who will mark up the "palpable" lump (7mm tumor that has been biopsied)
  • 9:45am - Head to MRI department for 10:15am MRI where they will find the smaller 4mm spot and somehow mark it up so surgeon knows what to cut out.
  • 12:30pm - Arrive at the surgical center for pre-surgery prep
  • 1:30pm - Surgery scheduled to begin so if you could send some healing, cancer ass kicking thoughts my way then, I'd appreciate it.
  • 2:30pm - Surgery should be wrapping up and I'll go to recovery.
  • 4:00pm - Head home, assuming I have kept down crackers and peed.    Times are all assuming the surgery starts on time.   My mastectomy in 2011 started 2.5 hours late so hopefully we'll be luckier this time!
We'll have full pathology back in about a week and then will make the final determination on chemo. Doctors at Newton-Wellesley have discussed and they are thinking no based on pathology of biopsied spot but they'll consider again and we'll do a consult with Dana-Farber.   If no chemo, I'll have about a 4 week break before radiation starts.

Craig will likely post once I am out of surgery or I will do so from recovery, once I am awake.

Cape Cod



Craig and I had a great weekend away on Cape Cod.   We played golf, ate great dinners, drove and walked around the "Outer Cape" (where neither of us had ever been before) and went to a local vinyeard for a wine tasting.   It was just what the doctor ordered!  

Now the cancer ass kicking begins...

Friday, September 26, 2014

Signing off for the weekend

This weekend, Craig and I are headed to Wequassett Resort in Harwich (Cape Cod), MA to celebrate his 40th birthday and our upcoming 12th anniversary.   Even though it is only for 2 nights, we are excited to get away before the surgery and treatment madness kicks in.   Thanks to Dad and Ann for watching the kids and dog!

Thursday, September 25, 2014

Surgery Scheduled

The hospital finally called today to confirm that my surgery will be Thursday, October 2 at 1:30pm.   I will have an MRI that morning at 10:15am to mark the second spot.  My Dad will come up to help deal with getting the kids on and off the bus, which is very helpful.  I don't think the surgery itself will take too long but I need to call the surgeon's office to talk about some of the day of specifics, since we did not know what the surgery would entail when we met with her on Monday.   I am happy to have this booked so we can get the curing process started!

Wednesday, September 24, 2014

Meeting with radiation oncologist

We met with Dr. Tillman today, a Mass General radiation oncologist who works out of the Vernon Cancer Center at Newton-Wellesley Hospital.  I will not have my radiation done at NWH since Dana-Farber has a radiation location about 15 minutes from my house.  Since the radiation will be 5 days a week for 6 weeks, they recommend going to the most convenient location (and you can't go wrong with Dana-Farber as your "alternative" location).

Dr. Tillman did an exam and based on her assessment, I should be able to have the radiation without having to remove either implant.   The radiation beams come at you from both sides of your body, so some women have to have the implant in the non-cancer side removed in order for the beams to hit their intended target.   So this was more good news.   We need to confirm with the doctor at Dana-Farber.  Dr. Tillman is contacting them directly.    So it looks like I'll have relatively "simple" surgery (maybe next Thursday), a 4-6 week break and then 6 weeks of radiation (assuming chemo stays off the table).   Hopefully all this nonsense will be wrapped up by Christmas!

PS Thanks to whichever neighbor dragged the trash can up to my garage!

Book suggestions

I have a feeling I will have some downtime over the next few months and would love some book recommendations.   Feel free to leave a comment with a book you have read recently or one of your all time favorites.

If you are local and happen to own the book, I'd love to borrow it.  Just make sure to put your name in it so I can return it when I am done!

Tuesday, September 23, 2014

New Toy

For my first diagnosis, I bought myself an "I have breast cancer so I *need* an iPad" iPad.   (This also happened to be my very first iPad.)  It came in very useful for my hospital stay and waiting room waits, etc.

Yesterday, my "I didn't even know I had breast cancer when I ordered it but it will certainly come in handy" iPhone 6 arrived.   The bigger screen is cool but I'll probably still use the iPad or laptop for blog posts as the keypad is still a bit small.    (Craig is jealous because his iPhone 6 is not due to arrive until mid-October.  I chose the less popular gold one, so it shipped immediately.  Now that I have a cover on the back, you can't even tell what color it is!)

We got an appointment at 10am tomorrow with Dr. Tillman, the radiation oncologist, so hopefully we'll be able to figure out what my surgery will entail.

Monday, September 22, 2014

Meeting with the Breast Surgeon

After the PET Scan, I had an appointment with Dr. Cronin, the breast surgeon both my plastic surgeon and oncologist recommended. I think she is the head of breast surgery at the hospital. Not a bad person to have on the team!

Before she came in the meet us, she went to see the radiologist who was scheduled to read my PET Scan as she wanted the preliminary results ASAP.  I already liked how this woman operates.  She was able to report that after three reads of the films, they see no evidence of the cancer spreading. Once we got that out of the way, we started talking about the surgery.  My implants from my prior mastectomy and reconstruction makes things a bit tricker.  Radiation can adversely affect them so it is possible the right one will need to be removed for a period of time (or probably possible forever).  Also, there are 2 spots that came up on the MRI but they could only find one on the ultrasound.  We obviously need to remove both, so she needs to figure out how to find it. At this point,  Dr. Cronin will consult with all the necessary doctors (plastic surgeon, radiation oncologist, radiologist, oncologist) to decide the best approach and let me know so we can schedule the surgery.  If we just need to remove the 2 spots, that would happen in the next 2 weeks and the surgery would be relatively easy. If the plastic surgeon somehow needs to be involved, it might take a little longer to get that scheduled and the recovery would take a bit longer.

For me, the next step is to see the radiation oncologist so she can examine me and help decide about the potential implant impact.  I guess on the PET Scan,  my implants look huge... As in Dolly Parton huge.  They are not that big in real life to Dr. Cronin wants the rad onc to make her decision after seeing me and not just my films. Hopefully we'll see her this week.

Dr Cronin had the final pathology from the biopsy, and the tumor appears to be HER2-, as expected which provides further evidence this is related to my original tumor and is once again very slow growing and not aggressive.  We'll have to wait for testing of all the tissue after surgery to confirm this assessment but that lends itself to no chemo.

(Oh and my post PET Scan "meal" consisted of a small salad, a bag of potato chips and 6 Oreos. I'm not proud but it tasted gooooooood!!!)

Preliminary PET Scan - ALL CLEAR!

I'll write more later about the appointment with the breast surgeon, but before she even saw me, she met with the radiologist who was going to read my PET Scan.  They went through it three times and see nothing other than the larger of the 2 spots in my breast.   WOOHOO!   Final report will come tomorrow but I don't expect anything to change.   We are now even more confident this is a local recurrence which is totally curable!     Another good day!

PET Scan

One of my awesome neighbors drove me over to the hospital for my PET Scan. I had read online that a Xanax (anti-anxiety med) might be good to calm my nerves but I did not want to drive after taking it. I am sure I will say this MANY times during this journey, but I have really been overwhelmed by all the offers of help from near and far.  I know the family and I will be well taken care of!

My stomach growled all morning so I was eager to get the test done. Last night I had celery with unsweetened peanut butter and broccoli for dinner.  YUM!

The tech, Karl, took me in ahead of my scheduled time since I was at the hospital super early.  (At first I thought the tech's name was Kari, which is the name of one of my BFFs in Finland so I instantly felt her presence here.  I love when that stuff happens.). Karl took my blood sugar to make sure it was where it needed to be and then injected me with radioactive glucose.  (Basically the glucose will bind to potentially cancer areas and light up on the scan.  They don't want you to have glucose from food coursing through your body, so hence the dietary restrictions.).  I had to rest for 45 min to let the glucose go through my body but luckily I was able to listen to music and I just closed my eyes and rested. It was kind of nice!   I chose Enya for my music as it reminds me of my honeymoon.  I listened to her over and over again on the plane ride from LA to French Polynesia. Takes me back to an incredibly happy and peaceful time!

After 45 min, Karl took me into the room where the scan was happening.  I laid down on the table and just chilled out for about 28 minutes. The tube is bigger than an MRI so not claustrophobic for me at all. Just had to lay still and of course, everything starts to itch!  It went by fast and I was able to eat right away.  I had gone  Apple picking yesterday with Emily and our good friends across the street and had brought one of the yummy apples with me. Then I got a huge coffee - luckily they had soy milk at the coffee shop in the hospital.  Now I'll get something a little more substantial in the cafeteria and wait for Craig to get here for appointment with breast surgeon.  I should have PET results tomorrow!


Sunday, September 21, 2014

Theme Song

In September 2012, I attended a retreat for young breast cancer survivors in Nashville.  It was sponsored by an organization called Women Rock for the Cure.  The retreat itself was hard for me because I am pretty sure I was the only one there that had not had chemo.   Everyone talked about their chemo experiences a lot and I had zero to add.  I also felt a bit "guilty" about not having had it. 

On the second night, the people running the retreat did a "performance" for us and chose the song "Firework" by Katy Perry.   It was fun to watch and they clearly had fun doing it.  I did not really pay attention to the words to the song.  Back in August of this year, Craig and I saw Katy Perry in concert so I have been listening to her music a bit more.   I finally actually listened to the words to "Firework" a month or so ago and better understood why they chose that song.  One line in particular really resonates with me now...

If you only knew what the future holds
After a hurricane comes a rainbow.


Right now is seriously a hurricane and I just need to wait it out for my rainbow!   I have decided this will be my theme song.

PET Scan preparation

Tomorrow at 12pm, I will have a PET Scan to make sure the cancer had not decided to take up residence in other parts of my body. This is standard protocol and my oncologist is confident nothing will be found.  Since the appointment got scheduled so late, I have not received much in the way of instructions from Newton-Wellesley Hospital as to how to prepare other than "no carbs or sugar for 24 hours before and nothing but water for 6 hours before."   Not really being sure "no carbs or sugar"  means, I headed to the internet. 

The best information I could find was for an imaging center in Anchorage, Alaska (random).   I can eat the following:
  1. Meats: beef, chicken, lamb, pork, seafood, tofu
  2. Eggs, cheese, unsweetened peanut butter, nuts
  3. Butters, margarine, mayonnaise, vinegar, oil
  4. Vegetables (non-starchy): broccoli, asparagus, spinach, green beans, cauliflower, zucchini, lettuce, mushrooms, bell peppers, celery
As many of you know, I went vegan/plant-based about 2 years ago so NO meats, cheese, dairy, etc. which basically is the bulk of this list!   So I am going to gorge on carbs until 12pm and then eat vegetables and nuts for the rest of the day.   Sounds fun!  I think I'll be pretty cranky by the time the test goes around and will rush to the hospital cafeteria after for some real food (since I have to stay at the hospital until 3pm for the appointment with the breast surgeon).   This should be a fun 24 hours!

Saturday, September 20, 2014

Telling the kids

Because the news was so positive at the appointment with Dr. Block, we decided to tell the kids on Friday after school.   I don't want to be hiding appointments from them.  My surgeon appointment on Monday is at 3pm so I already know I am going to have to find someone to get them off the bus.

We told them the basics:
  1. Mommy had breast cancer 3 years ago and now it is back
  2. Doctor's have a plan in place to treat it and I will do everything they tell me to do
  3. I'll have surgery and radiation which might make me a little tired
  4. Hopefully I won't have to have chemo (Emily was horrified when I told her it would make my hair fall out and said she does not want me having chemo)
  5. It should be all wrapped up by the end of the year
They both asked a few questions but seemed ok with the whole thing.  They ran off to see the new puppy our neighbors brought home yesterday.  Emily walked in and announced to the mom, "My Mom has cancer."    Luckily that Mom already knew what was going on!  I am not at all surprised about Emily's openness.  I totally expected it.

First appointment with the oncologist

Craig and I met with Dr. Block, my oncologist yesterday (with his sister, Anne, as our scribe).  Luckily she was able to squeeze us in this week.  Friday morning I was in really rough shape.  I felt like I could not breathe.  I was happy to get a plan in place but was terrified about what Dr. Block would say.  Luckily, the appointment could not have gone better and I felt like I could breathe again. 
This is what we learned...

Based on the initial pathology of the small sample the radiologist took this week, it looks to be a very slow growing cancer (Grade 1, which is different from Stage 1) with similar characteristics to my original tumor (ER/PR+ and likely HER2- but there is more testing the be done there). The oncologist thinks either (1) Tamoxifen (the drug I have been taking for the last 3 years to prevent recurrence) does not work for me or (2) the cancer is encapsulated in scar tissue with little blood flow and therefore the Tamoxifen is not reaching it.   In any event, I will stop taking tamoxifen and switch to something else, an aromatase inhibitor.   These drugs shut down estrogen production but only work in postmenopausal women, so I'll get shots to put me into menopause.    (Therefore, in January when it is 0 degrees outside, I am sweating, you'll know I am having hot flashes. ;) 
Standard course of action is surgery to remove cancerous tissue followed by 6 weeks of radiation to zap whatever might be left. After the surgery is done and they can test all the cancerous tissue, we'll make a decision about chemo.  She thinks probably no but we need overall pathology to make that determination.   You might think that chemo is the most conservative thing to do and why wouldn't I just have it this time...   There are studies that seem to show in cases like mine (or how we think my case will be) that the chemo really provides no additional benefit and does more harm than good.  I promise to attack this recurrence with everything that makes medical sense!)
We will meet with the breast surgeon (Dr. Cahill) on Monday to talk about the surgery.   It will have to be a little creative since I already had the bilateral mastectomy 3 years ago and now have implants.   We don't know if they'll have to remove the implant all together, swap it out, etc.  The breast surgeon will work closely with my plastic surgeon to figure that all out.  Radiation also complicates things as it can have an adverse effect on the implants. 

They took blood at the appointment and Dr. Block called me Friday evening to let me know the tests came back all normal - tumor markers, liver enzymes, bone something - basically anything that would indicate the cancer had spread came back indicating that is definitely has not.   PHEW!   

I'll have a Pet Scan on Monday just to make absolutely sure the rest of my body looks clear.  The doctor said multiple times this is just standard course of action and that she is not worried about it having spread since the tumor appears to be very slow growing.  They are referring to it as a "local recurrence."  That was the biggest relief for us and I walked out of her office with a huge smile on my face.

Here we go again...

I really hoped this blog would never be needed again but here we are, three years and 9 months after my original diagnosis with a recurrence.  So how did we get here?

In July, I had an appointment with my new plastic surgeon in Massachusetts, Dr. Driscoll.   My oncologist, Dr. Block had recommended him.  It was just an annual look at my reconstruction.  He complimented Dr. Glatt's work (NJ plastic surgeon).  He chatted with Emily about Frozen. I really liked him.   Then he found a small lump.  He asked if any other doctors had commented on it.  I said not and that I had not noticed it the last time I checked myself.  He figured it was scar tissue but recommended an MRI to be safe and to just get a look at the implants.

Breast MRIs must be done on days 7-14 of a woman's cycle so I decided to wait until September, once the kids were back in school to do it.  On Monday, Sept 8 I had it done.  I was nervous about the procedure itself - the claustrophobia - but knew I had gotten through one 2 years ago so I could deal.  It was fine just loud and uncomfortable keeping my arms up over my head for 45 minutes while lying face down. My tech was very nice and comforting and I got it done.

On Friday of that week (Craig's 40th birthday), I called Dr. Driscoll office to check in on the results. He called back early afternoon and told me that he and Dr Cahill (who I later found out was a radiologist) had looked at the films and they were inconclusive so they wanted me to come in for an ultrasound and potentially a biopsy.  He did say they thought the lump was benign. Craig was on a plane back from San Fran so I headed across the street to my friend, Jen's house for company and to talk.   We talked for a while and then her daughter returned from preschool so I checked Facebook (since I am addicted to it...). At that point I learned that a woman that had lived on my hall freshman year at Holy Cross, Darby Stott had lost her battle with breast cancer that morning.   Darby's initial diagnosis was about a year after mine and it came back last May in her liver.  I was very happy to not be alone at that point    Cancer sucks.

On Monday, the plastic surgeon's office called to schedule the ultrasound.  Luckily they had an opening on Tuesday morning so I of course took the appointment.

We decided that Craig would put the kids on the bus and neighbor Jen would come with me.  After my last ultrasound in January 2011 where I was alone at the appointment, I did not want to be alone but I did not think this would be anything.  Dr Cahill did the ultrasound and told me the lump was definitely not a cyst.  It was a solid mass.  There also was a very small thing that could be seen on the MRI that she tried to find with the ultrasound but could not. She thought the lumps could be a fat necrosis (which is benign and often happens after surgery or injury) but she was definitely being vague.  She decided to go ahead with taking the sample for biopsy. We had to wait a little while for her to free up but it ended up being a pretty short wait.  The biopsy itself was a bit uncomfortable which surprised me a bit since I have no feeling in either breast but I guess there are still some working nerve endings.  Getting the sample was a bit tricky because the spot it so small and is right up against the implant.  I went home to wait for the call the next day.

Dr. Cahill had told me she'd call between 3 and 5 so I kept myself busy.  Went to a PiYo (Pilates/Yoga) class, puttered around the house and then headed out to run errands.  I planned to be home well before 3pm.  At about 1:30pm, while I am standing in the dairy aisle at Whole Foods my phone rings with a weird local cell phone.  I answer it and it is Dr. Cahill.  She said something like, "we need to talk.  The results are abnormal. You sound like you are out somewhere. Go somewhere quiet and call me back in a few min."   I ditch the shopping cart and sprint out to my car to call her back.  She tells me it's cancer and my mind races.  She said something about "local recurrence". (The lump is in the breast that had the rumors.)  my mind continues to race.  She has already spoken with my plastic surgeon and he has offered his support. She talks about the implant probably having to come out but them reminds me next steps are a discussion with my oncologist and breast surgeon.  She agrees to call them to find out who I should see first (oncologist).  I hang up with her and call Craig.  I cry.  He curses.  I call my parents.  They are shocked.  I go back into Whole Foods to finish my shopping and then drive home.   I stay off the internet which is SHOCKING.  I tell a few close friends.  I imagine unimaginable things and wait for Craig to get home.

I made so many changes in my lifestyle after the original diagnosis - consistent exercise, vegan diet, more organic foods, etc.   I know I did everything the science pointed to last time but it still freaking came back.  We are mad and sad.  Time to kick cancer to the curb again!