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

Two Days Before Surgery

Just when you start feeling better and things are getting back to normal, it's time to gear up for surgery.  I think the hardest part in this whole journey is picking yourself back up again after every knockdown.  This week I did my P90X workouts - only legs and only half the workout.  I couldn't do the 90sec wall squats or complete the single leg wall squats I've lost so much muscle mass.  But I was happy that I got sore after the first workout and it cleared after the second.  Glad to see my body heal and recover.  Going to need that with surgery this week!

My MRI came back good - my 4cm tumor in my breast has shrunk to 1cm and my 3cm tumor in my lymph node has shrunk to almost non-existent.  The mammogram was not helpful (tissue is too dense) and they did not do an ultrasound (the MRI is more precise).  The surgeon will remove the remaining tumor, the dead tumor cells, plus some margin.  They will use something called guide wires plugged into the center of the tumors which they hook in during a mammogram.  Does not sound fun.  This will help the surgeon pinpoint the location and give her the best chance of success removing all the cancerous cells.  Once I'm wired I will undergo the surgery.

I'm having mixed feelings about the surgery.  While I'm happy I will finally have all the bad cells removed, the risk of a follow on surgery to get the margins and the 40% chance I will have to live with lymphadema are hard to swallow.  I've never been one to take meds, even pain killers.  I stopped pain meds 1 day after my appendectomy.  Need everyone's prayers that this surgery will allow full arm movement, no residual lymphadema, and no damage to my nerves or long term numbness in my arm.  I keep remembering what another survivor told me - one day at a time.  For now I am just trying to trust in my doctors, enjoy this beautiful summer weather with my wonderful husband and kids, and crossing a few Boston items off my bucket list.  Mom flew back today too to help out while I'm recovering.  It's go time again!

Quick business trip to Pratt &Whitney sporting my new wig

Dinner at Gibbet Hill Grill with our visiting Texas friends

Love and Support

This week has been incredible.  I've been on this cancer journey for 4 months now and the continued outpouring of love and support is just amazing.  To start the week I received a wonderful gift - a quilt about "What Cancer Cannot Do" with patches of handwritten letters of encouragement from our Texas family.  The next day I received a bouquet of roses from one of Brady's classmates parents who had just learned of the news.  Truly I am blessed!

  Support From Far and Near

This week I also learned of the news that my Aunt Rose has been diagnosed with the same type of breast cancer.  Fortunately they found it on her annual mammogram and were able to diagnose it early.  She will have an MRI this week then meet with her surgeon about removal options all of which will be followed by radiation.  She called me to tell me how much she had learned in the last ~2 weeks going through this process, how she's been thinking of me, and how the chance of recurrence doesn't change much whether you have a lumpectomy or mastectomy.  We may be recovering from surgery the same week!  Our love and prayers to Aunt Rose for strength and healing as she begins this process.  What a heck of a 2016 for her and Skippy (Skippy is currently in a neck brace after a fall at work, multiple lacerations to his head and face, and 3 broken vertebrae). 

Sometimes you just have to put mind over matter.  Today, 6 days after completing my 8th and final chemo treatment, I went for a run.  I won't kid you it was hard.  I have put on ~10 lbs in chemo and lost probably the equivalent if not more in muscle mass.  I ran for 4 minutes, walked for 3 minutes, ran another 2 minutes, and walked another ~10 minutes back to my car.  My legs felt like lead.  My back was stiff.  I'm sure I looked awkward but hey you have to start somewhere.  

Speaking of awkward, since I have to travel for a business meeting with my customer and supplier later this week (first biz trip since starting chemo), I attempted to draw on eyebrows and give my face some resemblance of professional.  Apparently brow pencils are for filling in gaps, not drawing on new eyebrows altogether.  This is going to take some practice.  Here is a time when I would have benefited from a female sibling LOL.

Surgical Consult

Met with the surgeon today to lay out the surgical plan.  We are still planning for a lumpectomy and auxiliary node dissection of the lymph nodes.  She ordered another MRI scan to help her determine the margins around the tumor to remove.  Once that is complete we will set a date for the surgery but right now looking at the third week of August.  Following the MRI I will have another mammogram and ultrasound just ahead of my surgery.  Some good news and bad news, I don't need my ovaries out as my genetic testing was negative (huge relief) however they are planning to take ~15 lymph nodes from under my left arm which is higher than the 3 we were planning and will involve drains for ~1.5 weeks after surgery as well as some PT.  It will take up to ~1 year to determine how this impacts numbness and swelling in my arm, but should have full muscle movement.

Surgery will be at MGH Boston where they will conduct the procedure, and also remove my port, and I will stay overnight for observation.  After that I get to come home and will be out of work for about a week in recovery.  It takes ~10 days for the surgical path report to come back then I will meet with the surgeon again to review the results and remove the drains.  If the margins are clear I won't need additional surgery.

If timing works out I will have my surgery the third week of August, start radiation the third week of September, putting this behind me by Veterans Day in November.  I will likely have to take the Tamoxifen (estrogen suppressant pill) for ~5 years after this ordeal but all this should put me at <5% chance recurrence of the disease.

While the Taxol chemo did take out my eyebrows, some eyelashes, and my nose hair, surprising to find the hair on my head is starting to grow back.  I am now showing peach fuzz.  I'm ready to get back into a workout regiment as well ahead of surgery to give me strength for the upcoming phases of this triathlon.