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

3.5 Weeks Post-Op - Systemic Considerations

This weekend we made a quick weekend escape to Vermont for an old friend's wedding.  It rained (or snowed) the whole time.  While checking into the hotel and trying to get everything in from the rain I pulled a left chest muscle.  It has been extremely painful ever since.   I also started my rehab stretches in preparation for radiation mapping later this week.  Unfortunately with the pulled muscle this is not easy.  I'm having to stretch, ice, rest, and take Advil.  Hopefully it gets more manageable by Thursday.

Today I also had my follow up with the medical oncologist (cancer doc).  I hadn't seen him since my last chemo so we got caught up on the surgeries and results.  We talked about the "faint" ER+ status, this was mainly in the breast tissue while the lymph nodes were triple negative.  Since the tumors shrunk like swiss cheese, and given the type and extent of my cancer, I have a 30% chance of recurrence in 5 years.  This reduces to 23-25% with Xeloda taken 6 months following radiation, and to 20% following 5 yrs of Tamoxifen.  Another treatment he is considering is ovary suppression injections following Xeloda.  However he indicated this is a difficult clinical decision given my tumor "faint" ER+ status and the bilateral mastectomy, the treatment needs to fit the need.  Without signs of residual cancer elsewhere in the body this may be unnecessary punishment on the body.  We still have time to sort it out.

In 2 days I go for my radiation mapping.  Hope all works out given my chest soreness so I can start that phase of treatment.  I did just get approved for 8 weeks of leave, but figure with recovery and follow up appointments behind me, and radiation underway, I can go back at 5 weeks.  So looking forward to 2017!

Happy to have my hair back but after Halloween the white has got to go

2 Week Post-Op Checkup - Recovering Well

Today I saw both my surgeons for a 2 week follow up appointment.  First I met with Dr Winograd in Plastics.  He removed the remaining two stitches in my incisions and talked through my recovery.  All indications are that I am healing well.  At this point I can start stretching to increase my range of motion (so far left has better range than right) but no resistance exercises or lifting anything heavier than 10 lbs until 6 weeks post-op.  I can also resume driving.  Will have to wait another 2 weeks before I can put lotion or vitamin E on the incisions.  This shouldn't bother me too much, I don't find they're very itchy.  He also told me I can roll over and sleep on my side as long as I keep wearing the hospital bra at night (it's like a sports bra so no biggie).  One thing we are monitoring is my upset stomach.  At first we thought it was just some rich food we ate, but my stomach has been up and down the past week, so will monitor for recurrence of c-diff.  At this point I am taking my granules again 2x/day to see if that gets me back normal before we pursue other measures.  Otherwise everything is healing well, I'm feeling good, and on the track to recovery.  I am now clear to start radiation.  Based on our last meeting with Dr McGrath (radiation oncologist) that will be somewhere 4-6 weeks post-op.  Will also start oral chemo pill Xeloda at that time.

Next I met with Dr Gadd and one of her assistants in surgical oncology.  We reviewed the surgical path report in detail.  For a mastectomy they look at anterior (forward) margins and posterior (back) margins.  For the left side it was <0.1cm clear anterior.  This is less than MGH standards for 0.2cm however Dr Gadd wasn't concerned given the tissue is removed, it's fairly porous, then dipped in ink, so <0.1cm is a fairly gross measurement.  At other hospitals this is acceptable.  She also removed all the tissue so there was nothing left to take.  The potential of any residual will be sterilized in radiation.  It was a similar story for the posterior against the chest wall.  Here the margins were 0.2cm or greater, which meets MGH standards.  All the tissue was removed.  There's also a membrane between the tissue and the pectoral muscle which was removed and did not show any signs of tumor penetration.  Again, while the chances are low, any residual cells will be sterilized by radiation.  Overall the path report showed at least 50 foci of live cancer cells in the removed tissue, the largest at 0.9cm, spanning 7.5cm across the upper central/outer, so a mastectomy was the appropriate surgery.  The right side showed no evidence of malignancy.

Everyone's body and cancer is different.  When I originally met with the team at MGH, and the second opinion at Dana Farber, both hospitals recommended chemo prior to surgery.  Based on how my body responded to the chemo (swiss cheese) it really didn't make a difference doing chemo first.  Some women have a complete response, meaning chemo kills all the tumor, and they can do the lumpectomy and save their breasts.  That wasn't in the cards for me.  But looking back on it not sure I would do much different other than skip the lumpectomy and extra surgery.  AC chemo has been the hardest on me so far, glad I got through that when I was at my strongest.

At this point I need to continue to take it easy for another 2-4 weeks so I can fully heal and put my body in the best position to handle radiation.  Radiation will administer a lifetimes worth of radiation to that portion of my skin over 6.5 weeks.  My skin will harden, will grow a sizeable sunburn, and will weaken my immune system and increase my fatigue.  Hopefully the 6.5 weeks will go by quickly and I can finish before Christmas and New Years.  Dr Gadd's team recommended I don't travel for 1-2 months after radiation so I can build back up my immune system.  We did talk about lymphadema when I travel, but it is unlikely.  If I start feeling tightness of my jewelry or sleeves on my left arm it may be a sign.  It's not life threatening but would warrant a follow up with Dr Gadd's team when I returned.  It's also not recommended I spend any time in a hot tub until things have had more time to heal.  The biggest long term concern is infection to my left arm.  Given I will have some level of permanent numbness in my underarm area where the lymph nodes were removed I won't have the normal sensation of an infection.  For me now, signs would be more systemic like fever or aches, and maybe some redness in the infected area.  Will have to watch for insect bites, cat scratches, etc and how my body responds.

I'm enjoying my free month off work and making the best of it while still resting.  I still haven't been able to sleep through the night since surgery so feeling a bit tired.  Not sure if that's because I've been confined to my back or the itchiness from the antibiotic that's going away, or both.  Doesn't seem to change if I nap or not so I'm trying to nap more.  It's also been nice to catch up on my house projects, but definitely couldn't make it as a stay at home mom!

Getting into the Halloween spirit with snapchat

Cancer Free!

Got a voicemail from my surgeon saying the path report came back and my margins are clear - I am now cancer free!  Holy cow, how long I have been waiting for this day!  She left the message last week, but it was only tonight that we got a chance to discuss it and she confirmed it was clear all around.  She confirmed the mastectomy was the right choice for surgery as tumor cells were spread throughout the tissue and another lumpectomy would have been unsuccessful.  She also confirmed the right side was clear, no tumors.  Even with that information I'm comfortable with my choice, no second guessing and no waiting for it to reoccur.  I mentioned to her the itchiness I have at night that's making it difficult to sleep.  She thinks that's a side effect of the antibiotic that I just finished, and to take a Benadryl until it clears.  Also talked to her about the area with pinching after I had reached for a wash cloth, she thinks that will clear in the coming weeks as the site heals if not then by PT.  Dr Gadd asked that I stop by to see her when I'm finished with Dr Winograd at my follow up next week.  She also recommended I ask him about starting radiation in 3 weeks (6 weeks post op) to get started on that phase of treatment.

I thanked her, on behalf of me and my family, for taking good care of me in surgery and seeing to it that all the cancer was removed.  Here's hoping I'm on the downhill stretch!

4 Days Post-Op - Healing

The last couple days have been a bit of a rollercoaster.  Got home from the hospital Saturday, felt great Saturday and Sunday.  Monday I weened myself off the Oxycodone and was miserable.  Had a headache, achy, woozy, and no strength.  Almost felt like coming down with the flu but with no fever.  Had no visible sign of infection around my bandages.  After talking with ladies on my BC blog and my nurse neighbor went back on the Oxycodone which gave me relief.  I slept well last night, only waking for ~1 hr, and slept in until 9:30am (~10 hrs total, felt great).  Looks like I'm not quite ready to ween off the meds yet.  Today I got Mom and Gary out for a couple laps around the cul-de-sac and my nurse neighbor came by for visit.  My neighbors are planning a couple nights of meals this weekend, very sweet of them!

This evening I developed a low grade fever at 99.6 deg.  This isn't high enough to warrant an ER visit (would have to be 100.5 deg), so will continue to monitor this and hope it's just how my body is healing.  The feeling of pressure on my chest has turned to a feeling of rocks under my bra.  Not pleasant.  To help with some of the discomfort we took out the large gauze rolls from under my arms.  Big relief!  If I sleep well again tonight I will try for a shower tomorrow.  The drains are starting to subside, now down to 35-45 mL per day each.  Once they get down to 20-30 mL for two days in a row I can have them removed.  May get there by Friday or Monday next week.  Having the drains out will help alleviate some of the feeling of "rocks" in my chest as well.

Hurricane Matthew is making his way through the Caribbean and is expected to hit the northeast by Saturday or Sunday.  I'm going to try to convince Gary to go leaf peeping Thursday or Friday if I'm feeling up to it.  Missed the foliage big time living in Texas all those years.  I figure if I can lay in bed watching TV, I should be able to sit in a car and look at leaves!

Speaking of laying in bed, there are way too many choices on TV to watch.  Tried Dancing with the Stars tonight but couldn't follow it, too much back and forth in time.  Watched some of the Voice but was too much bickering.  Tonight is the VP debate and AL wild card game, think I'll be watching the latter.  This is also the week Tom Brady returns to the Patriots after the "deflate-gate" soap opera created by the NFL.  Also started Orange is the new Black netflix series, will see if I can get into that.  And of course Lucifer is back and the Ranch starts Oct 7th.  Looks like I'll have some good TV to watch and get me through my 4-6 weeks of leave!

Still waiting on the surgical pathology report, should only be another 3-6 days!

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