Mastectomy Complete

Surgery #2 is in the books.  Things went much faster for the mastectomy than the lumpectomy.  I arrived at MGH Boston at 10:15am.  After answering a few questions and getting changed into the hospital gown they were wheeling me away by 11:45am.  I said goodbye to Gary and was taken to a second pre-op area where they had me sign the surgical consent form and prepped me for surgery with a nerve block.  Basically they did an ultrasound of my back, found the right two nerves, and administered a local anesthetic.  Felt like two bee stings.  It also made my left eye droop temporarily which felt funny.  Then they took me right into the operating room at ~1:30pm where they gave me oxygen then the full anesthetic.  Last thing I remember was holding Dr Gadd's hand and telling her after this I would be cancer free.

I woke up at 5:45pm in the recovery ward.  Felt like someone was sitting on my chest and I had scrapes under my arms.  My eyes fluttered and I fell back asleep until ~7:15pm.  When I woke again they let Gary and Erik come back to see me.  The nurse there recognized me and Gary, turns out it was the same nurse I'd had for the last surgery.  After a little water and juice they wheeled me up to my hospital room.  This time I wasn't as lucky, I had a roommate so Gary wouldn't be able to stay over.  Gary and Erik stayed until ~9:30pm.  After they left I was able to get up, pee, and walked a couple laps around the hospital floor.  Then one of Dr Gadd's residents came to check my incisions.  At that point I finally got to go to sleep.  The ward was very peaceful, with the exception of a couple brief nurse visits to check vitals (BP, oxygen, and temp), I slept through the night.  I hadn't slept much all week in anticipation of the surgery so felt good to finally get some rest.

The next morning I got a visit from both Dr Winograd and Dr Gadd's residents who checked the incisions.  They were happy that there wasn't any fluid build up or bruising and told me I'd be able to go home that day.  Amazing, only 24 hrs after having the girls chopped off I'd get to go home, woohoo!  Right now I'm on Tylenol, Oxycotin, an antibiotic, granules, and Colace.  If I don't need the Oxycotin I can stop the Colace.  And after the drains come out in ~1.5 weeks I can get off the antibiotic.  Right now I'm feeling a little tired and my chest a little sore, but very manageable.  It's definitely not as bad as I had expected.  In 7-10 days I will get my pathology report and hopefully this time I get negative margins.

I'm very thankful to have my family nearby.  Dad and Terry took Brady to their house for the weekend so he can get some special Grandpa time.  Mom stayed at the house with Parker.  And Erik hung out with Gary letting him stay with him in Watertown so he had a short drive to MGH.  I have such amazing supporters too - my neighbors are bringing us food and my coworkers ordered me another week of Blue Apron.  Thank you all so much, I couldn't do this without you!!!  At this point I am off 6-8 weeks to recover before starting radiation.

Ready for surgery

Post-Op Recovery

Heading home

A New Dawn (Sunrise in Maine) - Seems Fitting

2 Days Before Surgery - Conflicted

When is the last time you have committed to do something - a workout program, a class, building something - that lasted a full 9-12 months?  Maybe you don't do it every day, but you do it often, at least weekly and always have evidence of it around your house (workout clothes, course material, tools, etc).  Having cancer is a lot like this.  While you didn't choose to do it, it's something you work daily/weekly, and while you may not be happy with the outcome each step of the way it's a work in progress always assessing and making course corrections along the way.

I have to admit having parts of my body removed is terrifying.  As parents we try to be strong, even when the outcome is uncertain, because we have to be brave and face whatever life throws at us. Even then I'm beginning to have second thoughts about the bilateral mastectomy.  If my chances of dying from external causes is twice as likely as getting cancer, why not just do a unilateral?  Would be an easier recovery and less likely to have complications.  Am I being selfish adding additional recovery time for a bilateral and reconstruction when I should be focusing getting the cancer out of me and starting radiation?  Then again, 2 more weeks in recovery versus 9-12 months for treatment for cancer recurrence is a no brainer, right?  

Slightly less terrifying than losing body parts is getting back into shape.  Not working out the last 7 months has made me mushy.  If the cancer regiment weren't enough seeing my body deteriorate is just a bad.  I feel 100x better when I have on my wig and baggy clothes.  When can I get a real start on getting back in shape?  In radiation?  In my next 6 months of chemo?  On endocrine therapy?  In time for my sister in law's wedding in June?

One of the things this cancer journey has taught me is to stop over analyzing everything.  There is no right or wrong answer, only the one you can live with yourself for choosing.  Was helpful to talk with the radiation oncologist today and learn that only 10% of women have capsular contracture (scar tissue issues with the implant), and there are procedures to help correct it.  One less worry bead to keep me up at night.

Reconstruction Consult and Follow Up with Oncologist

Today we met with the plastic surgeon to discuss reconstruction.  What once would have been awkward having digital photos taken of my chest now is routine.  Based on his assessment given my girls are even and not sagging he recommended direct to implant reconstruction even with the radiation.  He would perform the surgery once my surgical oncologist (Dr Gadd) finished the mastectomy.  Assuming the tissue has good blood flow we would do the implant.  If it did not, they have an alloderm "sling" that could be implanted that the skin would adhere to and help take pressure off the healing skin.  Since alloderm is synthetic skin it can better tolerate radiation as well.  And if the tissue was in really bad shape he would put in tissue expanders with the alloderm that would allow time for the tissue to heal while gradually filling the implant before the start of radiation.  Tissue expanders have to be filled before radiation as the skin will harden and scar tissue (capsular contracture) will occur.  With the alloderm hopefully I would be able to handle the scarring and damage from radiation.  If not, they can go back in, remove the implant, and cut through the scar tissue to provide relief.  But typically it's not a good idea to have surgery on a radiated breast due to difficulty with the skin healing.  No one said this road was easy.  Whether he did one side or both sides it didn't matter to him from a reconstruction perspective, he could do the girls at the same time or in separate procedures.  Obviously the risk with doing one vs two is double the chances of complications and a longer recovery time.

My medical oncologist (Dr Peppercorn) called this week to discuss some of my concerns following the unsuccessful surgery.  He confirmed I am stage 3 given tumor size and lymph node involvement, but that it wouldn't have changed the treatment plan in anyway.  We discussed the ER+ vs triple negative concern, his response is that the tissue has consistently shown some ER+ and I did have a good response to chemo so he wants to keep ER+ responsive drugs in the treatment plan.  We discussed more IV chemo vs pill chemo, his response was that there have been studies on 4 vs 6 rounds of Taxol but found the 6 rounds provided no additional benefit for the additional toxicity exposure.  And while I'd read that some people had 12 rounds of Taxol, it was low dose, not the dense dose stuff I took.  He also shared that there was a study for AC vs Xeloda, Xeloda being viewed as potentially "kindler gentler" version of AC particularly for elderly patients, but Xeloda couldn't beat the performance of AC.  That said, Xeloda still shows good statistical response for residual cancer so will be part of my treatment plan.  I will start low dose Xeloda during radiation then high dose for 6 months after radiation.  Will be two weeks on, one week off.  This is still chemo, not Advil, so I will have to get my blood count checked during my off week.  Side effects of Xeloda are diaherra, rash to the hands and feet, and low blood counts.  The good news I will get to keep my regrown hair.  Should the rash get bad they will lower my dose to allow my skin to heal.  Frying from the inside out!  The next major decision will be on endocrine therapy following Xeloda.  I can take standard endocrine therapy or take part in a clinical trial with endocrine therapy plus a drug called palbociclib.  But won't have to make that decision until next summer.

In front of me now is the decision to do a unilateral or bilateral mastectomy.  Unilateral has better short term benefits - less invasive, less recovery, less risk, and would still be able to move my right arm.  Bilateral has better long term benefits - less risk of cancer recurrence and better cosmetic result keeping the girls even.  What matters most to me is chance of recurrence, which is 15-20% in the left and 10% every 10 yrs in the right.  So at 60 yrs old it will be 20/20, at 70 it will be 20/30, and 80 it will be 20/40.  Since the surgeons have to coordinate calendars, it is likely my OR date will change.  That gives me a few more days to think about it.  I will be one happy camper when this is behind me!

Difficult Week

In the roller coaster ride called cancer, just when you think you've turned the corner, you see another 4,000 footer ahead.  After getting the bad news in the path report last week, we've been trying to figure out what's next.  My oncologist had the pathology lab run another hormone receptor test on the removed tissue - it came back "faint" ER+ (10-50%).  This is in addition to the previous pathology report MGH Boston ran on the biopsy slides (that we never had a copy of) that said 'weak' 10% ER+.  This is contradictory to the Lowell biopsy report that said "moderate" 60% ER+.  In essence this is saying the cancer is more "triple negative" type than "ER+" type which means it doesn't respond well to the standard cancer regiments that rely on drugs that stick to the hormone receptor cells and inhibit cancer cell growth.  Triple negative is also more common in young women, is regularly Grade 3, and is one of the more aggressive cancers.  So now I'm a Stage III triple-negative cancer patient which is honestly a little scary.

After talking with my oncologist and surgeon, I will be having a unilateral mastectomy on October 4th.  I will be in recovery for 3-4 weeks, then ~4 weeks after surgery I will start radiation.  During radiation I will take low dose Xeloda which is known for its effect on residual cancer (turns out it's pretty good for colon cancer too).  After radiation I will be on high dose Xeloda for 6 months.  Then the endocrine therapy Tamoxifen for 5 years.  My understanding is Xeloda is taken 2x/day, for 2 weeks on and 1 week off.  Also, I will be adding an new doctor to my cancer team - a reconstructive surgeon.  I will be meeting him next week and discussing my options for reconstruction.  My surgeon strongly discouraged me from pursuing an implant on the radiated side, she has never seen it be successful due to the hardening of the skin from the radiation causing the implant to be quite painful against your chest.  So if the cancer surgery to your underarm and chest weren't enough, they cut open your abdomen and use fatty tissue for the reconstruction.  And the cut is much wider than a c-section.  Am I going to look like Frankenstein after all this?

At this point my treatment has extended from 7 months to 15 months and possibly more depending on what we do with reconstruction.  My support team tries to keep me in good spirits, but this was a week I just needed to grieve.  I've honestly thought is all this worth it?  Does God have a bigger plan for me?  It's all so frustrating because I don't feel sick at all.

Tried to give myself a boost this week taking my kids to school, going for runs, and going to a Look Good Feel Better class.  Brady and Parker always lift my spirits, they help me forget this cancer business and I get to just play.  For my runs I've been going on the Bruce Freeman rail trail running for up to 10 minutes.  I've gone 3x in the last week.  The Look Good Feel Better class was pretty cool.  I was there with 4 other women, all older, with a cosmetician who gave us a huge makeup kit and tips for overcoming the effects of chemo.  For me it was evening skin tone and drawing on eyebrows.  It was definitely a mood boost to meet these other women, have a good laugh, and for a day look my best.  I also got a surprise from two of my neighbors - they brought me a plant and a Halloween basket full of cookies.  Turns out one of the ladies, Phyllis, is a nurse in recovery at MGH and knows my surgeon.  She too said Dr Gadd is outstanding.  Was good to see them and we appreciated the sugar boost!

With my next surgery imminent, Gary and I decided to take another weekend escape.  This time we will be going to northern NH to stay at the Mt Washington Hotel and hike around Crawford Notch.  As long as I'm feeling good I'm going to make the most of it.  Will also be fun to drive the Porsche on the Kanc.  Looking forward to a great weekend!

 A ton of free stuff in the LGFB kit

A gift from Phyllis and Karen

Lumpectomy - Positive Margins

Got the surgical pathology report back this week and there was bad news - positive margins.  This is a time when the word "positive" is not a good thing.  During the lumpectomy the surgeon removes the tumor as well as margins around the tumor to ensure all the cancer is removed.  The size of the tissue and the margins is planned based on imaging.  My tumor was originally ~3.9cm plus the tail and a ~2.5cm tumor in my lymph nodes.  Based on imaging the main tumor had shrunk to ~1.6cm and the tumor in my lymph nodes was no longer visible.  The surgeon removed the main tumor, the necrotic (dead) cells around the original tumor, plus margins so basically something the size of a hamburger bun. Unfortunately upon analysis of this tissue there were positive margins meaning evidence of invasive cancer all they way to the edges of the tissue sample.  This couldn't be seen from imaging.  Not only were there positive margins, in response to the chemo the tumor shrunk like "swiss cheese" meaning there were still 0.3cm or less alive invasive cancer cells throughout the tissue sample.  In addition to that, there was evidence of DCIS (pre-invasive) tumor growth in most of the ducts they sampled.  In the lymph nodes they found invasive cancer in 4 of 10 nodes. With positive margins, residual invasive cancer, and extensive DCIS there is little chance (<20%) that a re-excision lumpectomy would be successful.  Plus it'd leave a strange cosmetic result.  After talking with my surgeon today I will be having a mastectomy.  Now the question is one or both, and reconstruction or not.  These decisions could lead to one surgery and done by years end, or multiple surgeries spread out over ~1 year.  There is no further surgery needed in the lymph nodes.  Good Lord, I'm only 38 and I'm making decisions about body parts to remove due to disease.

We also learned that my tumor is marginally estrogen receptor positive (ER+).  To this point we have been told it was ER+.  My oncologist is ordering the tissue be retested for this receptor.  His goal is to understand why the tumor was not 100% killed by the chemo.  He's thinking one of three things happened - it became resistant to the chemo, I could have used more chemo, or the tumor had poor heterogeneity (not all ER+).  This additional test should help rule out the latter.  If it is poor heterogeneity, that would make some of the cells triple negative which is the hardest kind to get rid of.  He's still waiting on the test but has started talking to me about using Xeloda, an oral chemo pill taken 1-2x/day during and after radiation, as an extra measure.  That means side effects and longer time dealing with this cancer business.

On top of all that, this morning I woke up with "cording" in my underarm where my lymph nodes were removed.  Cording occurs frequently in younger patients who undergo auxiliary node dissection due to how quickly the cells attempt to heal.  Basically a long cord forms from your armpit, through your bicep, and into your forearm.  Literally looks like a tight violin string and is fairly painful.  My surgeon gave me a prescription for PT and stretching exercises.  When it pulls it's a sharp pain and makes me kind of light headed.  As I stretched it also felt like the tight ball in my armpit was unrolling, it was pretty strange.  The good news is this cording should go away on it's own in a few weeks.

This was one of those days where I just needed to go for a run.  I ran for 4 minutes, holding my left arm to my chest the whole time, then walked for 20 min with Mom.  The incision on my breast was still sensitive and it felt like the ball was swelling in my armpit.  I would have walked/run/walked more but didn't want to push it.  Long gone are the days where I could run 3-4 miles without issue!

I'll be having the mastectomy in 1-2 weeks, followed by 3-4 weeks recovery, then radiation for 6.5 weeks along with oral chemo.  At this point I hope to have this behind me by Christmas.

Healing auxiliary node dissection and drain site

Hair regrowth - chemo has turned my hair white and fuzzy

Post Surgery Recovery - 1 Week Post-Op

It has been 1 week since my surgery.  Today I saw the nurse and had my drain removed now that I am outputting less than 30 mL/day.  We had to drive into MGH Boston but it was worth it to get that pesky drain out.  The nurse cut the stitches then had me take a deep breath and exhale as she pulled it out.  I didn't feel a thing and couldn't understand why she wanted me to keep breathing until I saw how long the tube was - must have been ~1ft inside my arm!  I can definitely feel a difference now that it is out as I have much less discomfort and "bruised" feeling.  My range of motion is good, I can raise my arm >90deg which the nurse said is above normal.  I'm also able to stop my antibiotics and today was the first time I did not take any Tylenol for pain.  Having the drain out also meant I get to drive again just in time for my present to myself - a cobalt blue 2001 Porsche 911 Carrera 4 Convertible - and get it registered at the Mass RMV.  To celebrate Gary and I drove it to dinner tonight with the top down and enjoyed some of the last great summer weather.  We are planning to continue driving it in Sept/Oct before the weather turns.  It is a SUPER fun car to drive!  Going to need some help naming this car or coming up with a good personalized plate. 

I also want to thank my family and friends for all the well wishes and support I have received since surgery - your support gives me the strength to heal, go to doctors appointments, work, and keep my spirits up as I complete this next phase in my treatment plan.  A huge THANK YOU!  Still waiting on the pathology report to confirm they got it all, should have that by end of this week.

Live Your Dreams Now, Not Tomorrow

Surgery Complete

It was a long day but the surgery is complete!  I arrived at MGH Boston at 9am where they took me in and prepped me for surgery.  First they inserted the guide wires.  Definitely not my favorite thing to do.  Basically they compress you in the mammogram machine then poke you with needles to the markers left from the biopsy.  Then they insert the guide wires and pull the needles out.  The wires are taped to your chest and covered in a bandage until you go in for surgery.  That whole process took about 45 minutes.  Once complete we began the waiting game.  My surgery was scheduled for noon but they did not take me in until 4:15pm.  Erik came by and stayed with us for a little while and took Gary to dinner.  I came out of surgery at 7pm, woke up in recovery at 8pm, then they took me to my hospital room at 9pm where I finally got to see Gary and eat (crackers).  Gary had gotten a call from the surgeon telling him the surgery went well.  Coming out of surgery I didn't have much pain, just stiffness and tightness in my underarm plus numbness in my first 3 fingers of my left hand.  The stiffness in my fingers disappeared by the next morning when I was discharged.  The surgeon also removed my port.

I was discharged at 11am and am now resting at home.  On a scale of 1-10, 10 being the highest, my pain is about a 3.  I stopped taking the oxycotin and am just on Tylenol now as needed for pain.  I try not to push it, so will take some before bed or if I'm going to be out a while.  I'm also on an antibiotic, a probiotic (preventative since I had my appendectomy last December), and a laxative for the oxycotin.  Tomorrow I'll be down to just the Tylenol, antibiotic, and probiotic.  

A visiting nurse will come by tomorrow to check my drain.  They put me in a really cool pink front closure sports bra over the bandages and drain site.  The drain bag is latched to a special hook on the bra so it's supported and doesn't dangle.  Definitely designed by a woman.  Twice a day I have to empty the drain by uncapping the top and squeezing it into a measuring cup.  When I get down to 20-30 mL a day I can schedule with the surgeon to have the drain removed.  Tonight I drained 40 mL so I still have a way to go.  I'll admit it was a little creepy at first draining a bag connected to your arm, but the engineer in me got past it.  Right now the fluid is a reddish color, but should turn yellow then white eventually.  While I have the drain I'm not allowed to drive.  In ~1.5 weeks I should be able to get the drain removed.  

As part of my rehab I will start a stretching exercise where I walk my fingers up a wall.  I should be able to go higher each day.  I will not start any real exercises until the drain is removed.  In 48 hrs I can take the bandages off and expose the steri strips.  In ~2 weeks the steri strips will start to peel and I can remove those too.  

At this point I may be cancer free!  I will know for certain when I get my pathology report in ~10 days.  Now that my surgery is complete I can setup my appointment with the radiologist to get in for marking for my upcoming radiation.  As one radiologist told me, up to this point it has been about treating my cancer, now it will be about preventing recurrence.  Excited to have the surgery behind me - two legs of the triathlon down, one to go!

Laughter and fun care package from my co-workers

Ready for discharge from the hospital