The Bad News - Stage 4

On Friday the 13th I got the bad news.  My oncologist called 4x on his cell, and he's never called on his cell before.  I knew this couldn't be good.  The results of my abdomen CT showed numerous tumor cells throughout my liver.  That explained the pulled muscle feeling I had just below my rib cage.  And the spot I felt above my hairline looked like it could be cancer too.  At that time he didn't have the results of the chest CT, since then that has come back with a couple ~3mm nodules on my right lung.  The spots on my lungs and bones would have been pre/early cancer and easier to spot treat, but my liver is the main area of concern.  After that our conversation was about treatments and options, but honestly it was a blur.  I had just skied 4x in one week, how could I be Stage 4?  Are the survival rates that bad with triple negative that I won't get to see my boys grow up?  What will poor Gary do?  My head was spinning.

I met with the oncologist at the next available appointment to figure out what's next after I had time to absorb the news.  Now that the cancer has metastasized to my liver and possibly bones and lungs, I will be going back on chemo.  He suspects the tumors are triple negative given that was what was in my lymph nodes and scheduled me for a liver biopsy to confirm.  The results of the biopsy will also be used to determine if I qualify for a clinical trial at MGH.  In essence I would receive the same chemo, but with the addition of a antibody designed to trigger an immune response to a marker in the cancer cells.  If I qualify for the trial my treatments will be more frequent and in Boston so a bit harder logistically, certainly in the winter.  I had the liver biopsy earlier this week, still waiting on the results.  Wouldn't that be cool if it wasn't cancer at all?  (A girl can hope) I also had a bone scan which thankfully confirmed only the spot above my hairline and potentially a couple other spots on the skull, too early to tell, but nothing elsewhere.

With the change in diagnosis I used some frequent flyer miles to take a quick trip for just me and Gary to Florida to try and clear our heads.  It was warm, and everyone was excited about the NFL playoffs, and a little pool time was just what I needed to get my thoughts together.  This is not a death sentence, my fight will just take a little longer.

Timing what it is sometimes, there was a 9 day docu-series called The Truth About Cancer based on the best selling book that we watched every night this past week.  This had a lot of good information about cutting edge research and procedures in the fight against cancer.  My biggest takeaways were how juicing, supplements, nutrition, and detoxification can help boost the immune system and give your body the best chance of healing whether in chemo or not.  After watching this series I scheduled an appointment with a natural health center.  I'm also doing research on the Hope 4 Cancer clinics that offer advanced non-invasive therapies that may supplement chemo and give me a better chance of killing this cancer for good.

At this point some days I feel better than others. On bad days I have a tight cramping pain my abdomen, sometimes on the left, sometimes on the right, which subsides with a couple of Advil.  Sleeping can be hard too, I no longer can sleep on my left side due to the pain.  On good days I've slept well, get in some moderate exercise, and forget I'm in this cancer nightmare.  And I always have the smiles of my 3 boys to lift my spirits.

We continue to receive an outpouring of support from our friends and family, you truly are amazing and I have no idea how we'll ever repay you.  Thank you for everything, couldn't do this without you!

Follow Up With Medical Oncologist

Yesterday I had my follow up with my medical oncologist.  My blood work looked good with the exception of two proteins low in the liver and I'm a bit anemic, both of which he attributed to the radiation.  We will continue to monitor these.  My skin is healing very well but I am experiencing tightness and scar tissue building in the treatment area.  I need to spend more time stretching so I don't loose flexibility and range of motion.  Last Friday I had a random bump form just along my hairline above my right temple.  It may have been from a fall skiing with Brady but I did have a helmet on.  It could be not related to cancer at all but thought it worth bringing up.  My doctor agreed to play it safe and added a head CT to my orders for the chest/abdomen/pelvis CT.  I go for the CT scans tomorrow.  We also discussed a bone scan, but since I'm not experiencing any bone pain he didn't think it was necessary.

My doctor put in the orders for the Xeloda chemo pill which I will resume when I receive my new prescription.  This should buy me another 5-7% reduction in recurrence.  I will be taking a higher dosage (1500mg) 2x/day, 7 day/wk, for 2 weeks on / 1 week off.  The side effects of this are hand/foot rash and diarrhea.  If any of these get severe they will stop my dosage for a period of time to allow my body to heal.  It is chemo again, so I'll have to be very careful not to be around people that are sick and go to the ER with any fevers.  My doctor called this the "gravy" portion of my treatment plan, I'd probably call it something else haha.

At this point in my recovery I find in general it takes me longer to recover from things.  This weekend I was able to ski like normal, but I needed extra sleep for the next couple of days just to get my energy back.  Normally one good nights sleep and I would have been good.  The doctor thought this was residual effects of chemo and the cumulative effect of all my body has been through.  I will have to eat very well and get plenty of rest to try to keep my energy up.  And who doesn't need that anyway!

Done with Radiation

Treatments 21 through 28 were very long and painful but I made it, I'm done!  And just in time for the holidays.  The skin under my arm is bright red and peeling, the rest is brown and started peeling too.  Can definitely see the outline of the treatment area now.  For my last day I took the radiation technicians a grab bag of assorted makeup products as a Christmas present.  They gave me a completion certificate and I got to ring the bell "done!".  The staff at Emerson Hospital was fantastic throughout this whole process, very welcoming and accommodating.  I enjoyed the time with the other patients completing puzzles but by the end I was the only one left.  This is also the last day I will take the Xeloda chemo pill until my follow up with Dr Peppercorn in January when I have to increase the dosage.  For now I will enjoy the holidays with my family, heal and recover, and get ready for ski season.  Gary was sweet, he got me a lotus necklace to mark my completion, a symbol of rebirth.

Here's to putting 2016 in the rear view mirror and moving forward into 2017!

7 To Go - The End in Sight?

With work and the holidays the treatments are flying by.  I still enjoy my break in the day to go to treatment and back.  Each day I work on the puzzle in the waiting room with the other patients.  The good news is one of the two ladies I see regularly finished her treatment this week, the other finishes Monday.  We were all wondering now what?  Wait and see?  A lady I met in the look good feel better class just started so I'll have a new buddy working on the puzzle.  Gary is even into it too.  He comes with me on his off Friday's just to work on the puzzle haha.

I've completed 21 treatments and have 7 to go.  Today was the first time I noticed my skin starting to peel and feeling a little sore.  Especially under my arm.  Will be good to get this over with!

I've had two funny experiences so far during radiation.  Once while I'm lying there on the table getting radiation, all of a sudden the fire alarms started going off.  I have this huge machine <1 foot from my face blasting me with radiation, am I supposed to leave?  The nurses were unfazed, they just kept clicking through it, it was just a fire drill.  I thought it was funny they didn't turn the machine off.  Another time I was lying there in radiation and I had to sneeze very badly.  What do I do?  For treatment I have to lie in a specific position and not move.  I held my sneeze for 20 very long seconds.  The nurses told me next time just sneeze straight up.  I think I'll just hold it thank you.

Looks like I've picked up Brady's head cold, hopefully with a little rest this weekend I'll get past this quickly!

1.5 Weeks Into Radiation - 1/3 Way Done

8 down, 20 to go!  That puts me at just about 1/3 of the way through.  It's a pretty easy drive down and back to Emerson hospital in Concord MA.  And it's a nice break from the work day.  Mom and I chat in the car and sometimes we eat out for lunch on our way back.  The treatments have gone smoothly.  Once a week I meet with the doctor so he can look at my skin and discuss how things are going.  They also take images once a week to verify the treatment area matches the initial mapping.  As for me, my shoulder feels a little tight, the skin is starting to get red, and it feels tighter every treatment.  I'm going to start adding more stretching or yoga to my weekly routine to try to keep things loose.  I'm also religious about applying the skin gel 2x/day.  I do feel more tired, very much so after a glass of wine, I'm guessing this is due to the chemo pill.  I'm also super thirsty all the time.  There's so much to keep up with in this process - 2x/day gel, 2x/day pill, daily PT, and treatment.  No treatment or pills on weekends, and once I get to 2 weeks I stop taking the chemo pill for a week.  Think I need to get myself one of those dry erase calendars for the fridge to keep up with all this!

Mom flew back to Florida today.  She has been there every step of the way helping me get through each phase of treatment.  She's seen the best and worst of times, and has always encouraged me to stay positive and take it easy on myself.  If that wasn't enough she regularly made us dinner and kept my house spotless, no easy feat with little boys and pets.  Brady cried his eyes out as we drove away from the airport telling me to turn around cause he could "still see Grandma's hair."  She has done so much for us, she will truly be missed, but I'm sure Jeff will be happy to have her back!

First Day of Radiation and Oral Chemo

Today I began the next phase of my cancer treatment regiment with radiation and oral chemo.  I will be receiving daily radiation for 6 weeks or 28 treatments.  This number is slightly less than originally planned if the lumpectomy had been successful.  For my first treatment I had to lay on the table, put my arms overhead, and they setup the radiation machine using lasers and coordinates on my chest.  This part took about 30 minutes.  At first they didn't think I'd actually be getting radiation today, but I was in the system for it, so I did get my first treatment which took about 10 minutes.  For the treatment the machine shoots radiation from 3 different angles about 1ft from my body - angled from behind my left arm, angled from above right arm, and over my left breast.  The technicians ask me over the speaker to hold my breath for each shot, this pushes your chest up and your heart down and out of the path of the radiation.  After the treatment I felt some needles and pins in my left shoulder, but the technician thought that was attributable to having to lay in that position for so long not the radiation itself.  Driving to and from the hospital took 25min each way, and with 15min for treatment, I should be able to get there and back and be done in ~1hr 10min.  It would take me that long just to drive to the hospital in Boston!

Today I also began the oral chemo pill.  I really struggled with this last night.  Having an appointment and a nurse delivering IV chemo meant someone administered it to me and I had to do it.  The chemo pill means I have to do it and keep myself disciplined and on schedule.  And I'm not exactly excited to be going back on chemo.  But come morning I thought about my boys and how I need to be around for my husband, so the 5-7% increase in survival with this pill made it easier to swallow.  I take 2 in the morning and 2 at night, within 30 minutes of a meal, and with a full glass of water.  About 30 min after taking the pills I felt a little groggy, but otherwise no side effects.  I will take the pills 2 weeks on, 1 week off, with a lab check for blood levels.  So far so good.

Given the residual disease, margins, and receptor status, I pursued a second opinion from Dana Farber on my remaining treatment plan.  It's great they can do it all online and have full access to my records since they share the same patient gateway as MGH.  It took ~1.5 weeks for the DF doctor to perform the assessment, and like before, they came back with the same recommendations as MGH - radiation, Xeloda, and Tamoxifen.  A few important points differed from MGH.  First, ovarian suppression would only come into play if ovarian function resumes, however given low ER+ status it may be outweighed by possible side effects.  They also referenced another chemo trial but I'm not eligible in the trial period due to when I finish my other treatments.  DF also considered my margins to be positive.  Positive or negative, the treatment plan is the same.  Insurance won't likely cover a second 2nd opinion but it gave me reassurance I'm on the best treatment plan given my type of cancer.

This week I also returned to work after being on medical leave for 5 weeks.  The first meeting I was in was discussing the same topic when I left.  In other areas it was great to see the progress and hard work by the team paying off.  The absolute hardest part about getting back into work was the pace, it is incredible.  It has taken me 2-3 days just to get back in the mindset to be able to receive, process, and act on some many signals coming in at once - emails, calls, texts, IMs, meetings, action items, etc etc etc.  The people who work on F-35 are truly amazing to handle it all.

This whole cancer process has taught me to value your time with loved ones, accept help knowing you may never be able to repay it, and make yourself a priority.  I'm also a better manager/leader because I have had to practice delegation, empowering a team, and coaching.  Having cancer has afforded me the opportunity to be home, spend time with family and friends, and prioritize the things most important in life.  I am very fortunate to be where I am with all the people who support me.  Yes, cancer sucks, but I am grateful for the refocus on that which is most important - happiness.

The radiation room and starry sky

Radiation Mapping Session

Today I had my radiation mapping session.  Overall it took about 1.5 hours.  First we met with the nurse and went over the skin care recommendations while we waited for the doctor.  She gave me an aloe vera gel to apply 2x/day during radiation.  They also have a 24hr hotline should something strange arise and I need to talk to a nurse (sudden blistering, lung or heart problems, etc).  Then I met with the radiation oncologist.  He has seen the path report and given the residual disease, the thin margins, and my age he agreed with taking Xeloda chemo during radiation.  He also got a second opinion from a colleague of his in Boston who had the same recommendation.  In the past he has had a few patients on Xeloda while in radiation.  If the toxicity to the skin becomes too much they will stop me on the Xeloda.  I really am going to be frankenstein when this is all over.  After we reviewed the side effects, skin irritation and fatigue being the primary, I signed the consent and went in to be mapped.  Two nurses prepped me on the bed with my arms over my head, put marking tape on me, and had me take a deep breath and hold it while they took a CT image.  Once they were happy with the setup and images they gave me 3 tattoos - one in the middle of my chest, one above my breast, and one under my arm.  The tattoos look like pinheads and felt like a minor sting.  Then I got my schedule - I officially start on 11/9 and more importantly finish on 12/20 just in time for the holidays!  I've been told the skin irritation peaks 1-2 weeks after completing radiation so maybe I'll be giving happy new years high fives instead of hugs.  Either way I'm excited to be getting into this 3rd phase of treatment and go into 2017 with the majority of this mess behind me.

As an aside, the last three nights I have managed to sleep through the night with the help of Tylenol and Ativan.  Thank goodness, it only took 3.5 weeks post-op to get a good nights sleep!

Never Thought I'd Be Here

The Familiar Uniform

Mail Order Chemo