Therapy

Yesterday was my occupational therapy (OT) evaluation appointment.  Even though I was a pre-Physical Therapy (PT) major for awhile as an undergrad, I have to say that I'm not exactly sure the difference between PTs and OTs.  And I had thought I was going to see a PT, but I am, in fact, seeing an OT.  And she is also wonderful.

One of my fears with all of the treatments I'm going through is lymphedema.  Every treatment (surgery, axillary lymph node removal, chemo, radiation) increases the likelihood of its occurrence, and since I get the full package, that's a lot of risk factors!  There's not a lot known about exactly what causes lymphedema or even fully how to prevent it, and there's no cure, so the best "treatment" is to catch it early and maintain it at an early level.  So I have some exercises to try to prevent it, and to treat another, related side-effect that I do have--cording.  I think the cording was responsible for much of the sensitivity I've been complaining about.  I got a great handout on preventing it, and how to best ease into movements after surgery from the therapist.  Sure wish they made it a part of the pre-surgical information they gave me! 

I have been babying my arms and movements so much the last three weeks that I was pleasantly surprised at how much I am now allowed to move--and how much I was actually able to move.  I think I might have overdone it a bit, though, as I'm pretty sore today!  Still, I was almost able to lie on my side in bed last night, although only for a little while.

~~~~~~~

Other big events in the last two days include attending TWO knitting groups (the daytime one and the nighttime one that I'd been trying to start since last summer), being out of the house for a 6 1/2 hour stretch without flopping from exhaustion, doing a little house cleaning, and putting a camisole on over my head (as opposed to stepping into it)!  That and continued socializing and Buffy watching.  The back of the recovery cardigan is done, as are the pockets:

The kids have busy weekends (Congress, Forensics, birthday party, Girl Scouts, work...) and Greg's out of town tomorrow and we're having some friends over for the Super Bowl so I have to figure out what to make.  All good things keeping me busy--very good things!

Radiation Oncology

Today was my follow-up appointment with the general surgeon (Dr. Lal) and the first dedicated appointment with the radiation oncologist (Dr. Schulz).

Dr. Lal is also pleased with the way I'm healing and how even I appear, which apparently isn't common with the spacers (?).  She also took off the steristrip over the lymph node removal scar and said I could leave it uncovered.  Basically, she said I'll be seeing lots of other doctors in the next 6 months to a year and they'll be monitoring my "breasts" for lumps or other signs of recurrence, but after that time, she will be the one I see for follow-up and clinical breast exams.  I'm okay with that, because she's awesome.  :)

Then I met with Dr. Schulz and he went into somewhat greater detail about radiation.  The start date will be 3-6 weeks after my final Taxol infusion.  If all else goes according to schedule, that should be about June 24th.  I will still be having Herceptin via the port, but it does not interact with radiation like the A, C and T do, so I can have it alongside the radiation.  Radiation will be 5 days a week (M-F) for 5 1/2 weeks.  Unlike chemo, the side effects of radiation develop in a cumulative manner.  Supposedly the first few weeks aren't a big deal (and each appointment is only 15-20 minutes), but then the two most common side effects start to build.  Skin irritation (ranging from slight pink to peeling blisters) and fatigue are the likely side effects, both lasting for up to a month after radiation is done.

I asked Dr. Schulz why chemo is done before radiation, as I had an inkling but wanted to know for sure.  I know that chemo is sometimes done after surgery and sometimes before surgery (if a tumor is very large and/or seems to have reached into lymphatics and/or surrounding muscle, the goal is for chemo to shrink it first), but always seems to be before radiation.  He explained that research has shown (and even told me which research--the group, the n size, etc.) that likelihood of recurrence is lesser, and survival is greater, when chemo goes first.  The reason is the chemo is systemic, so if there are any escaped cancer cells in the body, you want to get them first before they can settle in and set up house in another location.  Radiation is localized, and since there was lymph node involvement and the tumor was near the chest wall, recurrence there is more likely, so you want to hit it with more than just chemo--thus the radiation.  But metastasis is worse than the local recurrence, so chemo first.

Expansion #1

I haven't blogged much the last few days because there hasn't been much to blog about.  Well, there's one kinda big thing regarding work, but it's still too up-in-the-air to elaborate on yet.  Hopefully I'll know more by next week.

Today was my first expansion appointment at the plastic surgeon.  I thought I'd get both sides expanded, but I guess my skin was/is rather tight on the right (tumor) side, so Dr. Sterkin had started the implants uneven when placing them during surgery and today just brought the right side up to the left side.  He also spent time explaining the timeline for reconstruction.  He said that we'll work to get me fully expanded during the time I'm having chemo so that I'll have that fully-expanded buffer before I start radiation.  Radiation can cause all sorts of skin and tissue issues (and can mess up implants), so he said that the final reconstruction won't happen until 6-9 months after radiation is done.  And I'm not sure exactly when radiation starts, as the appointment with the radiation oncologist isn't until tomorrow.  Either way, it's still a long road ahead!

The expansion itself was remarkably painless.  There's a valve-type thing in the expander and they just puncture it with a needle attached to a big syringe and top things off.  :)  Other than the needle poke, I felt nothing.  And I really don't feel much different size-wise, either.  Here's what the tissue expander looks like:

And here's where it sits, behind the chest muscle:

I heard the gradual process of expansion described as being like the way your abdomen stretches during pregnancy.  :)

The doctor did peel off all my surgical steri-strips (and then re-apply some), and that felt odd.  He's very happy with the way I'm healing and the way things look.  He also was surprised I hadn't started PT yet.  I'd been being super careful movement-wise so that I didn't hurt anything, and I definitely feel that my range-of-motion is limited, so I'm pretty happy that I'll get to work on that.  He gave me an exercise to start (walking fingers up the wall), and I came home and bumped my first PT appointment up to this week.  Here's hoping it helps and I can soon put shirts on over my head--I've been raiding Greg's closet since I own so few button-up shirts myself.

I'm glad I'm moving up the PT, too, as my CT scan and bone scan (and pre-chemo blood work) are scheduled for February 3rd and I need to be able to raise my arm over my head to do the CT scan.

Moving right along...

Hypersensitivity

I've been mentioning that the "big" pains have been gone for a long time, but it's the little things that are annoying me.  Over the last few days, the little thing that's been driving me nuts is the bizarre feeling that I get every time I get a chill.  Essentially, when a chill runs down your spine, it RUNS DOWN YOUR SPINE!  But mine have been stopping at my breast area, circling, and focusing on the areas where the drains were removed, and then settling in my right upper arm, where my lymph nodes were removed.  Not only is there this bizarre chill-type feeling, but it remains afterwards as a bruised feeling--so much that at times it hurts to be gently hugged, or even to rest my arm on a pillow.  I talked to a few people I know who went through similar surgery and tried to google to see if "chills following mastectomy" were a thing, but couldn't find anything--until yesterday morning when I stumbled on this blog:  CoolGirlsGetCancer and the post entitled "tips for dealing with hypersensitive skin after a mastectomy."

The way she describes hypersensitivity is exactly what I've been feeling, so I started following her tips--essentially desensitizing myself by forced touching and pressure.  And it seems to be working!  Today I even went to the mall and as I felt a chill coming and that horrible pins and needles creepy feeling, I forced myself to rub my right arm against my torso.  Though it was uncomfortable, the feeling soon passed.  I hope this is the beginning of the end.

The other yucky, uncomfortable thing I've been dealing with is night sweats.  I can't find anything online about anyone experiencing them following a mastectomy.  Lots of women get them after chemo (essentially because chemo plows them into chemically-induced menopause), but I haven't seen any after surgery alone.  I don't know what's causing it, but it's strange.  And I don't have hot flashes during the day--it's just the sweating at night.

~~~~~

Several nice little things over the last few days have happened.  
*I got out for lunch (Thai food--which I've been craving since my appetite returned) with my wonderful friends and former-classmates Chelsea and Katie.  
*I chatted with a local woman (kids went to same schools--different ages) who not only has the same breast cancer team as me, but the same diagnosis!  (This made me so happy for some strange reason.  Because ILC is so much more rare than IDC or the in situ types, I had not yet met anyone else with lobular.  It's nice to know that, while it's rare, it's not THAT rare!)  
*I wore jeans for the first time post-surgery today.  
*I got a text this morning from my dear friend Mary asking if I'd be around since she was going to be in town this afternoon.  What a lovely afternoon catching up with her!

Two weeks

My survivor friend Dawn sent me a care package right before surgery and in it was a note that said "two weeks and then it's all uphill!"  Over the last two weeks, I've kept that in mind, realizing that I could not expect things to be easy for the first two weeks.  Today's the two week mark, so now I expect to wake up tomorrow morning 100% healed!   ;)

Honestly, though, I do feel so much better.  Nowhere near 100% yet--waiting till I can lift my arms over my head and sleep on my side, and drive a car.

Today I went to the daytime knitting group and between yesterday and today, got a nice start on my recovery cardigan.  I have been mainly knitting socks (sock weight yarn; size 1 needles) for the last 5 years.  This (bulky weight yarn and size 13 needles) has been so different and so fun!

I went for a walk in the sun along Silver Spring Drive, popping into some of the shops that I seldom visit.

I took my last (4x a day for 14 days) antibiotic.  So long, stinky sulfa drug!

I went to the Zilber Winter "Work Party" tonight (kinda snuck in there as I still got one paycheck in January and so was still on payroll when the invitation went out... tee hee!) and it was so nice to be back in the building/school that I love and to see so many people who have been a big part of my life the last 5+ years.  The last time I was at Zilber, I had not gone public with my diagnosis and it made my departure extra bittersweet.  This was a good trip back and it reminded me that I'm still part of ZSPH, even though I've graduated.  Besides that, it was nice to dress up and wear makeup for the first time in ages.

Medical Oncologist

I'm pretty sure that I have had more medical appointments since finding the lump (November 24th) than I had in my lifetime prior to November 24th, with the exceptions of my pregnancies.  Basically, I've been pretty healthy and not had to see a lot of doctors.  Most of my health has been managed by a Family Practice Doctor (and I love having one doctor for the whole family, as opposed to each seeing specialists).  Well, I now have a HUGE medical team, including:

Dr. Hall--my primary care (family practice) physician

Dr. Janik--OB/Gyn (though since genetic tests were negative, likely won't see her)

Dr. Lal--General surgeon (did mastectomy)

Dr. Sterkin--plastic surgeon (reconstruction)

Dr. Shah--medical oncologist (chemo, hormone therapy)

Dr. Schulz--radiation oncologist (radiation)

Ms. Stoddart--genetic counselor

Deb & Laura--nurse navigators

plus the radiologists and techs...

I can say, without exception, that every single member of my team has been fantastic!  If you find yourself with a breast cancer diagnosis and it's convenient to go to Columbia-St. Mary's (either downtown or Ozaukee Co.--most if not all of these doctors practice both places), consider this team.

So today was the first official appointment with Dr. Shah, though I had previously met with her.  Now she had the full surgical pathology and my plan of treatment.  

The last "step" before starting chemo, and since the cancer was in my lymph nodes, is to determine that it has not metastasized outside of the breast/lymph.  Therefore I will have a CT scan and bone scan as soon as I am healed enough to raise my arms above my head for the scan.  In addition to that, I need to have a MUGA heart scan, because some of the chemotherapies I will be on are known to damage the heart and they need a baseline.  So I will get those done, along with additional blood work and tests to determine if my ITP (low platelets) is actually ITP and not another cause of low platelets, and have an appointment to begin my first chemotherapy the morning of Wednesday, February 11th.  If any of the scans show metastasis, the whole plan of treatment will change, but I'm choosing to believe that I will start chemo that day.  My friend Katie and I were joking about actually wanting the doctor to give you the go-ahead to be able to start chemo, because who would WANT that?  But the alternative is that things are not good, and you're not healthy enough to start on a given day.  Therefore I'm hoping that I'm able to start February 11th.

My routine (referred to as "ACT") will include:

Adriamycin and Cytoxan every 2 weeks, 4 times (those will likely be Wednesday mornings, starting 2/11; I will then have to go in the following day for a Neulasta shot to boost my blood counts)

then

Taxol and Herceptin every 1 week, 12 times (also likely Wednesday mornings)

then

Herceptin alone every 3 weeks for an additional 12 or 13 times (to make up a full year)

Each chemo day will start with a blood test, to make sure my blood counts are high enough that I can tolerate the chemo.  I will then meet with Dr. Shah, and if all goes well, will then get the chemo.  The first rounds (i.e.: before doing Herceptin alone) I will be given IV anti-nausea meds before the chemo, then each chemo separately.  So essentially half a day every other Wednesday, then every Wednesday, then every third Wednesday for over a year.  The expectation is that I'll feel fine on Wednesdays and Thursdays, and then Friday will likely start feeling the side effects, but have the weekend to recover.

Side effects are, of course, individual, but they highlighted:

*hair loss, beginning on about week 3

*nausea/vomiting

*low blood counts, which may increase chance of infection, chance of bleeding, exacerbate my anemia, and may require a blood transfusion

*neuropathy

*general achiness and fever-like feelings following infusions

*heart damage and failure

*bone marrow disorder (myelodysplastic syndrome or leukemia)

Dr. Shah also shared statistics on what effect each of the prescribed treatments are expected to do in terms of cancer-free survival, given the specifics of my particular cancer (its stage, grade, size) and my health otherwise.  With no treatment beyond the surgery I have already done plus radiation, you'd expect 16% of women are alive and cancer-free in 10 years.  By adding chemo and the hormonal therapy (Tamoxifen), 63% are alive and cancer-free in 10 years.  That's a pretty good odds increase to put up with some puking, hair loss, and exhaustion.  (Keep in mind that survival with cancer can be for many, many years beyond that, so survival alone is much higher)

She also examined me and said that my healing from the surgery is going very well.  I am still super sensitive near the spots where the drains were pulled, and my right arm (where the lymph nodes were taken) is sore and sometimes very sensitive to the touch.  But I can tell that every day it's easier to move and less uncomfortable.  Today I was extra tired, after having a few days where I was more energetic.  It might have had something to do with the cloudy day, though.  I won't say I'm excited about chemotherapy, but it is the next stop, and I'm excited to get past the surgery stop and on to the next stage.  And the only way to get to the other side is to go through all the stops along the way.  So I say, "bring it!"

More milestones

Continuing on the road to healing, today I:

*Went out to lunch with my dear friend Katie

*Set up (on Facebook) a local nightly knitting group (let me know if you want to be added)

*Made dinner (it was just brats, fries, salad and fruit, but I had to chop and bake and fry and broil)

*Ran the dishwasher (other than needing Mira to lift the detergent and fill it--too heavy)

*Took a walk by myself (to meet Mira after school)

*Started the recovery cardigan

*Had a shower and washed my hair

*Finished season 3 of Buffy the Vampire Slayer

I'm sure you can easily imagine which of these was (by far) the best part, but all really did feel pretty good.

THE DRAINS ARE OUT!!!

It doesn't matter what else happens today--nothing can compare to the utter joy of having all five drains pulled!  Dr. Sterkin almost wasn't going to pull them, as he likes them to stay in for a full two weeks, but he acquiesced.  He's pleased with the way things are looking/healing, and I have an appointment for my first "enlargement" next Monday morning.

So here I am, horribly greasy haired (still can't shower till tomorrow) but so unbelievably happy!

Happy birthday to me!

Today I turned 45 years old.  I had long ago wondered how this birthday would "hit" me, as I was surprised that both turning 30 and turning 40 were relatively nothing birthdays, but for some reason 35 was tough.  

I can say that, at least on the actual anniversary of my day, 45 was another "nothing."  The rest of the year may prove different, but so far, so good.  :)

And I appreciate so many people hoping for a Packers' win for my birthday, or telling me how sorry they are that the Packers didn't pull off a win for my birthday.  However, I am not, have never been, and don't think I ever will be a Packers fan, so that didn't ruin my day!  I didn't necessarily WANT the Packers to lose, and I do have a lot of people who are important to me who are now pretty sad, but I can say that I enjoy watching the Super Bowl more when the outcome doesn't really matter to those I'm watching it with.  So in that sense, I'm happy with today's outcome.


All in all, it was another low key day with a walk outside, some knitting (turned the heel!), a family game of Rummikub, and Rice Krispie treats for dessert.

Knitting

Since Nancy asked what I was knitting, I figured I'd take the opportunity to share what projects I have going.

I started a pair of socks for Travis in December, during my mom's last hospital stay.  My goal is to get them past the heel turn before starting chemo so that they can be my "take with" project.  The best thing about knitting socks is that they're so small, lightweight, and portable.  I have developed my own sock pattern by merging my favorite techniques from several patterns.  I prefer to use funky yarns and a very plain pattern (just knit--not cables or such) because I do usually take the socks along to work on when I'm doing other things and don't have the ability to focus on a complicated pattern.  Today I actually got to the point where I can start the heel turning.  Yay, me!  :)

The other thing I'm not yet working on, but looking forward to is this cardigan:

I had posted how beautiful it was on Facebook a few weeks ago and a group of Facebook friends (many who do not even know each other--I'm not sure how they all pulled this off!) sent me the yarn to knit it.  Surprisingly I was missing a size 13 needle, but got an Amazon gift certificate from another friend, so ordered that.  As soon as I have the socks past the heel, I'm going to start my recovery cardigan.  It's super thick and will be so warm and comfy, but will decidedly NOT be a take-with project!

And much to my surprise, I received another beautiful gift of yarn from another set of friends.  I have five skeins of Noro Taiyo and the latest Noro magazine.  I have no idea what I will make from it, but Noro is so beautiful that I may just leave it as is for awhile so I can pet it and imagine all sorts of possible projects.  (And I'm open to suggestions from those of you who have experience with Noro color ways)

~~~

Today was a lot more normalcy.  I actually went to the mall for a bit because the temps were in the 40's and I decided to run errands with Greg instead of just walking around the block again.  I also helped (a little--very little) with making supper today.  

My complaints are minimal, but still annoying.  The compression bra that I need to wear post-surgery is causing some sort of rubbing irritation on my right side.  A lot of my whining about the drains and stitches pulling are in that area and when Greg got home, he told me that area is all red.  Ugh...  So glad I have an appointment with the plastic surgeon on Monday--hoping he can make a suggestion or let me switch to some other, less-irritating thing to wear.

Short, but sweet

Because I've been posting every day, I will blog today.  But it's not going to say much, because today was a pretty normal, uneventful day.

I visited (and walked) with some friends.  I knitted.  I read.  I listened to music (even figured out how to AirPlay to the new sound bar we had to buy when the receiver died right before last week's Packers game).  I finished my part of editing our manuscript. 

About the only eventful thing that happened today is that I made an appointment to (hopefully) get my drains pulled on Monday.  And Greg came home.

All in all, it was a good day.

Beginning the slow journey back to normalcy

Today is my one week surgery anniversary.  We had hoped that I'd be able to get in for surgery earlier, knowing recovery would require a lot of assistance and me being homebound, and with Greg having the semester break, it's a lot easier for him to "take time off" when school's not in session.  A surgery date of January 8th still allows him to be mostly home for those 3 weeks of recovery, with one notable exception:  the overnight Executive Committee Meeting, which takes place today and tomorrow in Wausau.  So we planned things as best as we could, thinking a week out from surgery I'd be in good shape, and knowing that my brother Steve is right next door with Mom.

But even yesterday morning, I was having doubts about Greg leaving.  There are so many little things that I can't do for myself--like picking up the laptop computer or reaching a bottle of Gatorade on the top shelf of the fridge or opening the bottle of antibiotics.  And there's the more important thing that Greg's been with me essentially 24 hours a day for the last two weeks.  I've kinda gotten really used to having him around.  :)

By last night, I was feeling quite a bit better emotionally, and physically the only real complaints are the DAMN DRAINS and ITCHY STITCHES.  Friends from all over have offered to drive kids places, to bring food, and to visit and keep me company.  Furthermore, I think I need to experience a bit of life alone so I can re-build my confidence.  And so I sent Greg off this morning for the long drive Up North.

As much as I've tried for it NOT to be, this last week has been essentially all cancer, all the time.  My readings, my daily tasks, my emails and phone calls and everything has had something to do with my diagnosis and treatment.  And I had gotten to a place where I felt like I would always view everything through the cancer goggles.  But today so many "normal" things occurred and it felt so good to think of the future.

1.  Cara emailed me overnight to tell me that her abstract was accepted for a presentation at the National Conference on Undergraduate Research in Washington State this April.  You always want your kids to do better than you, and Cara has already done so.  I've presented at conferences, but only posters.  This is an oral presentation!!!  I am so very proud and so very excited for her.

2.  The professor who is taking over PH101 at Zilber this semester emailed me with some questions about the course (which I've taught the last three semesters).  It feels good to think about what I've set up, and to hope that I will teach (this class or another) in the future.  It was so fun to talk with him about things that I tried for the first time last semester and which ones worked better (and which ones worse) than I'd hoped.

3.  My major professor emailed me the proof for our second publication this morning.  It needs to be edited by next week, and I am SO ready to focus my attention on this.  The research in this publication began before either of us were at UWM, and it has been a part of my graduate work since almost my first day in the lab.  Reading the summary of all that time, and seeing it in the official version reminds me of what I've accomplished in the past, and that I will have another line to add to my CV which will help me accomplish things in the future.

~~~

I also got out for two walks today--one with Steve and one with both Travis and Mira. And my dear friend Everett visited and brought me Schwarma, which actually tasted pretty good (I'm still chasing that elusive appetite).  In the past week, not a day goes by that I don't get cards, notes, texts, messages, emails from so many people in every part of my life.  And today I got the most beautiful flowers--orchids--from my friend Alison.  There is so much good surrounding me that I almost didn't miss Greg.  Almost...

T2N2aM0(?)

Be careful what you wish for!  Right after posting last night about not getting pathology, Dr. Lal called me with the pathology.  The fact that she called at 9 pm, and said, "do you want to put your husband on the line so I can talk to both of you?" tipped me off that it was not going to be stellar news.

I wrote earlier that my cancer was staged "T1cN0M0" and that it was a preliminary staging based on the biopsy, which could change after the surgical pathology, when they had a more accurate look at the size of the tumor(s) as well as lymph node involvement.

As you can tell by the topic of this post, my staging changed.  The tumor was larger than expected, so I went from T1 to T2. In addition, cancer was found in multiple regional lymph nodes, moving me from N0 to N2. We still don't know about metastasis (M).

The cancer staging that most of you are probably more familiar with is stages 0-4.  I'd initially been called Stage 1, but the newest findings bump me up to Stage 3a.  My wise friend Dawn tells me that, with breast cancer, anything under Stage 4 is really the same (Stage 4 includes metastasis), so I'm choosing to believe her. :)

The best news is that they found absolutely nothing cancerous in the left breast.

As Greg shared on Facebook, the two sentinel nodes were both found to have cancer in them.  Additionally, one of them was 1.5 cm and had extensions (i.e.: was not confined in the lymph node).  Dr. Lal then took an additional ten lymph nodes, and of those, 6 were positive.  Of those 6, the largest was 0.3 cm and none of them showed extension outside of the nodes.  She said that was a good sign that the lymph nodes are doing what they are supposed to--stopping the cancer from spreading further.  (Of course we haven't done any testing for metastasis, so don't know that for sure--thus the "?" after the M0 above)

In the right breast, there were many cancerous spots (she called them multi-foci).  They ranged from 1 mm to 4.6 cm.  There was invasion into the lymphatics of the breast and deep margins which she thinks she was able to remove, since she took tissue all the way back to the chest wall.  It was also relatively near the skin in front.

None of this really changes what we believe will be the course of treatment.  Dr. Lal said that she never makes recommendations on reconstruction for her patients, but she is very happy that I opted for the expanders.  The plan is for me to heal from surgery and have the implants expanded while I undergo chemotherapy.  Then hopefully the permanent implants will go in before radiation, and they will lift the chest wall farther away from my lungs, so that the radiation can potentially be even more intensive and therefore more effective with the "cushion" of the implant between the chest muscle and my lungs.  

I asked Dr. Lal how it was possible that everyone was so surprised at the lymph node involvement as well as the size of the tumor (everyone underestimated).  She said that it's the type of cancer--lobular as opposed to ductal--that is just really, really hard to find.  Again, I am very lucky to have found the lump on my own.  She said that she is still VERY optimistic and that, after all, it's breast cancer!  I think what she means is that it's a very, very treatable cancer.

I've allowed myself some time of being scared, but I need to dig down and find that "FUCK YOU, CANCER" part again.  I need to call on Joan of Arc and to channel all of you strong fighters who have messaged me with your survival stories.  Enough wallowing!

It's a Roller Coaster

I've been thinking but not writing all day today--composing blog posts in my mind, but then tossing them.  Because I want this blog to be positive and uplifting and good.  But I also want it to be truthful and honest and useful.  I want it to be a way for those I can't talk to everyday to know that I'm doing just fine, but I also want it to be something I can look back on in a year or so to see how far I've come and/or to share with others, if I ever become a breast cancer survivor mentor (which I hope to do).   So my dear friend Katie messaged me with a check-in and I unloaded about my crappy day to her.  She reminded me that while I might want to be back to normal, my body was "essentially run over by a semi truck."  And when I said I don't liked to be tricked into feeling good and then bad again, she told me it's a roller coaster--and not to forget to throw up my hands and scream some of the time.

So I'll start with the screaming.  :)

Today sucked because I was hoping to get the final pathology report from the surgery and I did not.  I felt (emotionally) like I did when I was waiting for the initial pathology report from the biopsy (i.e.: really crappy).  Today also sucked because I had my first appointment with the plastic surgeon post-surgery and I was so hoping to get at least some of the chest drains out, because they itch and pull and are a pain in the ass to empty and record, and I can't shower or sleep on my side until they're gone.  None.  I got absolutely NONE out today.  We drove across town during rush hour to see a doctor to pull drains and I got none pulled.  And today sucked because I am not used to being an invalid.  I have been homebound, semi-chair-bound for four days now and I REALLY DON'T LIKE IT!


But there was so much good today, too.  This is by no means all of it, but some includes:


My appetite is barely back, but my dear friend Tess brought me a beautiful spinach and strawberry salad, which tasted fantastic.

I was able to leave the house this morning and walk over to my mom's, where I had coffee with her and Steve.  And when I left, I walked home "the long way."

I messaged with not one, but two friends who are considering writing blogs about their own health/surgical journeys, in part because of reading mine (I'll introduce you to each other if you'd like).

Several of my former professors and administrators sent me a beautiful flower arrangement, with the message that it will "grow for years like you."

My friend Michelle dropped off dry shampoo for me to try (no energy tonight--hopefully tomorrow).

I chatted with Cara while she waited for her bus for work--and we talked about non-surgery stuff, which was SO welcome.

I left the house for the doctor's appointment, then stopped for supper at Qdoba with Mira (and Greg) and then walked the block and a half to bring Mira to her "Girls Who Code" class at Marquette University.  And then I walked the block and a half back to the car.  And then I got out of the car at CVS to pick up dressing-changing supplies.  And though I was tired, I did it. And I got so much fresh air.  And it felt so good.

And then I came home and crashed.  And a half-hour nap has made me a bit more positive. Off to empty the fricking chest drains, take the nauseating antibiotic, but then watch some Buffy with Greg and then sleep in the damn recliner, comfortable and loved.

Damned if you do, damned if you don't.

I'll work backwards in this post, starting with where I am now.  I'm comfortable, well-rested, pain-managed, and relatively clean, following a sponge bath that felt phenomenal!  :)  

I'm glad I posted something relatively early yesterday, as I'm trying for daily posts and if I'd have waited till later in the day, it would have been a particularly yucky post!  Apologies to Sarah, whom I invited over before the nausea hit me--so I was a decidedly non-responsive hostess when she came.

Today has been mostly more of the same:  bed-spin kind of nausea, no appetite, feeling better when I lie down with my eyes closed (which means I fall asleep).  But I am feeling a bit more myself now, and I think I might have figured out the cause of the nausea.


When I met with the anesthesiologist before surgery, one of the things that she offered, when I shared my unnatural fear of vomiting, was to use a Dramamine-like patch behind my ear.  She said I could leave it on up to 3 days, and explained that you had to be very careful not to touch it and then touch your face/eyes, because it causes pupil dilation and therefore blurry vision.  I joked with her about being careful that she wash her hands after applying it because I needed her at 100% during surgery.  

I was amazed that, though I had that spell of lightheadedness, I never felt the least bit nauseous post-surgery.  I took percocet every 4-5 hours around the clock, and still no nausea.  Saturday afternoon, I realized it had been over 2 days with the patch on, and I had been having some trouble focusing my eyes--especially reading or knitting, which were the pastimes I counted on to get me thru recovery.  So I took off the patch.  That night I slept straight through, and Sunday morning had a tough time waking up, followed by the nausea. I was also weepy, and feeling sorry for myself--which I HATE!  I had stopped taking the percocet Sunday morning, as my pain is really not bad, and I was worried about lots of side effects.  I called the nurse navigator this morning and left a message, meaning to ask for another patch (read up on them and found that you can switch from side to side every 3 days), since I was blaming the antibiotic for the nausea.  Then I read a little deeper.  It seems that the side effects from withdrawal of the patch are dizziness, nausea, and dysphoria.  Additional side effects from using it are irregular, rapid heartbeat (I'd been hearing my heartbeat in my ears, which was disconcerting), dry mouth and itching (which I also thought was likely the percocet).

So here I am, at least aware of why I was feeling so crappy!  I'm hoping that the knowledge, and the fact that I removed the patch "early" will get it out of my system sooner than later.  I'm just bummed because it worked so well that I was thinking I could maybe use it when I got chemo in the future.  Definitely re-thinking that now!

I'm not an anti-medication person.  I avoid as many as I can for myself because I have always been sensitive to everything I've ever taken (even things like Sudafed or Advil).  But medications really have a place.  It's just so depressing to start down that pathway where you take one, which gives you a side-effect that requires taking another to deal with, and then a third...  I know already that my chemo trip will be a lot of that, with the chemo meds requiring anti-nausea meds, and meds to boost my blood counts, and so on.  But knowing the side effects ahead of time, and what I can expect has always made it easier for me.  That's why all of your experiences, in notes and FB messages, have been so useful through this process.  Knowledge is power, and while Joan of Arc is leading me by strength, I think I have some patron saint of wisdom that's helping me out, too.  Teamwork is always the best, and I have the most amazing team.

My talisman and day 3 of recovery

I had heard from numerous people that their recoveries from surgery, cancer, and/or other medical issues were made easier with visualizations and/or avatars.  I also was reminded of my blessing way with Mira, when my dear friends from all over the world contributed beads to make a beautiful necklace for me to wear during labor so I would feel their support and strength with me.

And then, the night before the surgery, when I had neither chosen an avatar, or requested something from a friend, my dear friend and neighbor Tracy gave me both.  My talisman is Joan of Arc--a complete badass if there ever was one!  She's on my right ankle now, and leading the fight.  

~~~

Today is day 3 post-surgery and I've hit the complainy stage.  Pain is well managed, I can move really well, I've fallen into a pattern with eating, drinking, taking all sorts of meds and vitamins, and am overall feeling pretty good.   Therefore it's the little things that are getting to me.  The tape holding my five drains in is itchy and sometimes pulls at the hairs on my body.  The drains are bulky and annoying.  I'm not sure whether to cut back on the percocet because I'm sick of feeling fuzzy, but don't know how bad the pain would be if I stopped it.   I'm sick of being homebound and walking "laps" in the living room.  I'm terribly dry and my skin is itchy all over, but I can't really use lotion or anything with open wounds.  I want to sleep on my side, but must stay on my back.  And I can't shower, so my hair looks and feels absolutely disgusting!  <wah, wah, wah, wah, wah>

But I am so happy that my complaints ARE just little things.  

First stop down

I'm writing this two days post-surgery.  I'm also at least a little high on percoset, so I apologize in advance for rambling.  :)  I wasn't sure whether staying an extra night in the hospital made more sense, or getting home as soon as I could made more sense.  I can now say that I am SO happy I decide to go home.

I have heard from several survivors that the surgery is the worst part of treatment, and that it's good to get it over with. I'm certainly feeling that way now!  I am also thinking that opting to do everything at once (both sides and reconstruction) was a good idea, since I'm not really keen on doing this all again.  

As far as reconstruction, to over simplify, you can get synthetic new breasts (saline-filled or silicone or a newer silicone model called the "gummy bear") or you can have a fat transplant from another area on your body.  I was surprised to hear that I don't have enough excess body fat to make two "good breasts"--maybe one.  So I really listened to my plastic surgeon and went with his recommendation of the gummy bear implants.  Among other things, they're supposed to be more natural looking and cause less chance of encapsulation--which sounds decidedly awful!  

~~~

I ended up not getting out of recovery until almost 11:00 pm Thursday.  Obviously time meant nothing to me, but poor Greg was stuck waiting for hours. We still don't know why he wasn't able to come down to recovery, as I think I was the only one in recovery by that time.

Several things slowed everything down, making the surgery itself about 7 hours long. First, they got a late start.  I know that the surgery group had FIVE women getting mastectomies yesterday and my surgeon (Dr. Lal) did at least three of them.  She is amazing!  She spent time with Greg while I was still under, she visited me numerous times in the hospital, and she had others from her team check on me when she had to do surgery at another hospital on Friday.  If any of you are ever in this unfortunate position, I cannot say enough positive about my entire team--including the hospital nurses.

Then my sentinel nodes turned out to be positive, so Dr. Lal had to go back in and remove more nodes.  (I don't have the info on how many more she took, and the pathology isn't back yet from them, so don't know if the cancer spread more)

Finally, they did have to give me a platelet transfusion.  I've had ITP (low platelets) perhaps all my life, but certainly since I was pregnant with Travis and it was caught.  Rather than give me steroids pre-surgery (which can increase the risk of infection), my surgeons decided to just have platelets on hand in case they needed them.  So thank you to anyone who has donated platelets in the past.  I think it's much more intense than just donating blood.

I can remember being wheeled into the surgical room (it was so cold) and seeing two tables of surgical instruments, lots of bright lights, and a bunch of new people (surgical tech, nurse, anesthesiologist, etc.).  The last thing I remember is, "Lori, I'm going to give you medicine in your IV to make you relax" and then nothing till I woke up in recovery.

I had meet with the anesthesiologist prior to surgery and told her about my concerns about both anesthesia and nausea.  She gave me a Dramamine patch behind my ear and also anti-nausea meds in my IV.  That, combined with taking Deb's tips to eat whenever I took the pain pills has been great!

I was awake briefly after recovery and got to see Greg and then had all my vitals taken and some pain meds in my IV, but then I was ZONKED out.  At 4:30 am the nurse came in to check on me and ask if I wanted to use the restroom (can't tell you how happy I was to NOT have a catheter in), so I did.  But sitting up from the hospital bed made everything go crazy blurry, tingly, and fuzzy.  The nurse brought in a second person to get me to the bathroom, but then just by looking at me, they decided I shouldn't even walk back to the bed.  That was really scary, and set off a series of more visits from doctors.  I had blood drawn and all my counts were low and the resident wanted to give me a blood transfusion, but I wanted to avoid that if at all possible.  So I pushed fluids--both IV and orally.  And I ate, and I walked a lot around the ward.  Since that first time getting up, I've not been dizzy or lightheaded--just fuzzy from narcotics (yuck--I cannot imagine people choosing to take them unless needed!).  

I've heard that days 2 and 3 post-surgery are the worst in terms of pain, so I'm following everyone's advice and keeping up with meds every 4-5 hours.  Today I feel much more bruised and no sharp pains.  I'm hoping by tomorrow I'll be in even less pain and can wean off the percocet so I feel more like myself. 

~~~

I know I've said it before, and will likely say it again, but I am just blown away by all of my friends and family.  Messages, texts, cards, flowers, little gifts, BIG gifts... Greg's parents came in yesterday to play chauffeur and feed the kids so Greg could stay with me all day.  I feel like a spoiled child!  I really truly believe that all the positive thoughts and prayers and vibes are what has made this recovery so smooth (so far).  I don't want to disappoint any of you, so I'm working extra hard to get back to normal ASAP. :)  I am bummed by the positive lymph nodes (meaning more intense chemo as well as 6 1/2 weeks of radiation), but not frightened.  It's just one more thing I have to do to emerge on the other side.  One more stop for the cancer train, and I'm sure I'll meet more riders there--yet another silver lining.

Silver linings

One of the unexpected benefits of my cancer diagnosis and the forced break between jobs is that I have had several weeks where I've not had to be anywhere or do anything more demanding than grabbing coffee with a friend.  After 5 1/2 years of more-than-fulltime Grad School and work, it's a very, very strange experience.  Having Cara home for 2 1/2 weeks was lovely.  She's my #1 cooking and shopping partner and we did lots of both.  Besides that, she's made such a smooth transition from kid child to adult child that she's truly one of my favorite people to be around.  Travis and Mira were home a little less frequently, but they both were excellent sports about running errands with me, playing silly family games, watching bad movies, and doing a lot of talking and laughing.  And watching my "big" kids get along so well brings me immense joy.

However, the most unexpected and wonderful silver lining in this cloud has been the time I've spent exclusively with Greg.  Initially, he was the only one who knew about the lump and all the tests, and therefore he was the one to hear all my worrying and panicking and crazy talk.  But we both were winding down our Fall semesters, and therefore had more free time (or at least not-at-school time), which we spent together.  We started to "date" again, like we did in college--grocery shopping together, playing card games on the floor, watching bad TV in bed, and endless talking and hand-holding.  I didn't realize how much I'd been missing until I had it back.  I first met Greg over 27 years ago, started dating him 26 years ago, married him 21 years ago, and have never loved him more.  My courage in this fight is because of him.

~~~

Thank you to so many of you who messaged, texted, emailed or called me to see how I was doing today, and to remind me to do something fun or relaxing or "for me".   Greg was out of town for the day, and after the visit to the plastic surgeon yesterday, my surgery tomorrow became much more real.  Luckily, the bound copies of my dissertation were ready, so I went to campus to pick them up, visiting with a lot of people along the way, and having coffee with my (former) major professor.  Then I headed down to Zilber to deliver a copy, and saw a lot of friends there, too.  Finally, I decided to brave the cold and visit the mall to use up some of my gift cards and birthday coupons.  The old, bargain shopper Lori was thrilled to score two shirts, a pair of pants, a scarf, and a book (humor, of course--Demetri Martin!) for $13 out of my pocket.  Best of all, it was relaxing and nice to be out in the sun, despite below-zero temps.

Tonight we brought birthday cake to Mom in the nursing home and celebrated her birthday (tomorrow) and Mira's birthday (yesterday). 

And now I'm freshly showered with Hibiclens (ick!) and about to climb into freshly bleached sheets to watch some Buffy the Vampire Slayer with my husband.  All-in-all a very good day.

Two quick things: genetic tests and new surgery time

This afternoon I got the results from the remaining 12 genes in the genetic testing panel (specifics here), and I tested negative for all 17 genes known to be linked to breast cancer.  What that means for me is that I don't necessarily need to be so closely screened for additional cancers.  What that means for my children is that they, too, don't have any additional known risk of developing breast or many other cancers.  The flip side is that we still don't know what caused my cancer, but given that only 10% of breast cancers are genetic in origin, that's not much of a surprise.


~~~


The other change is that my surgery was moved up an hour.  It is now scheduled to begin at 1:00 pm.  If all goes well, I'll be in recovery between 7:00 and 8:00 and Greg will be able to see me an hour or so after that.

Surgery: Options and decisions

Before even meeting with the surgeon (Dr. Lal), we were made aware of the possible surgical options (listed here), but in our meeting with Dr. Lal, our tentative decisions were supported, and we were even more confident that our plan was the best for me.

All research shows that there's not a difference in treatment effectiveness whether choosing lumpectomy and radiation or mastectomy (and each doctor that I talked to said the same thing).  Obviously a mastectomy is a more intense surgery with more risky side effects.  However, lumpectomy requires that clean margins are achieved in surgery (and I know more than one person who had multiple lumpectomies due to inability to obtain clean margins) AND you must do 6 1/2 weeks of daily radiation following a lumpectomy.  Reconstruction is often more difficult to achieve balance following lumpectomy, and especially for a woman with small breasts (ahem...), it's a more noticeable change.  Radiation can mess up the reconstruction process, as it changes the tissues where the implant goes.  And we all have our baggage, and I know that my mom has been most frustrated by her changes that came about due to her radiation treatments for her cancer.  So if possible, I'd like to avoid that, thus leaning to mastectomy.

Furthermore, in addition to being Grade 3, my cancer is Ki67 positive.  The Ki67 gene codes for the Ki67 protein, which is involved in cell proliferation.  The higher the Ki67 (measured in percent of cells actively expressing it at time of biopsy), the more cells actively proliferating, and the more aggressive cancer.  Anything over 20% is considered positive.  My tumors were 62% and 55% (although the navigator told me that some women have over 90%, so not the most aggressive).  Still, enough to freak me out.  A combination of the Ki67+, Grade 3, and early diagnosis means a higher likelihood of recurrence (although there's some controversy surrounding the predictive value of Ki67, and not all labs even check it).  But it's a BREAST cancer and if there's no breast, there's nowhere for it to return to.

So I chose to do a bilateral mastectomy.  And while I like to think that I'm not the least vain person, those around me soon convinced me that I'm young (ha!) and healthy, and active, and that doing reconstruction made sense.  Additionally, it's easier to begin the reconstruction right along with the mastectomy (and I would much rather get this all done at once).   

Currently, surgery is scheduled for tomorrow--January 8th--at 2:00 pm. (There's a possibility the time might be moved up, as the plastic surgeon had a morning cancellation and would rather start earlier) It should be a 6-7 hour surgery, and I'd be lying if I said I wasn't somewhat scared.  I am not a fan of anesthesia at all, and I have never had general anesthesia.  I had hernia repair as a teenager with a local (was awake through it and remember feeling like they'd sliced me from stem to stern!); I gave birth to three children without any anesthesia--including one pitocin-induction; I regularly do dental work without anesthesia (my dentist hates that!).  Finally, I've been in the waiting room for all six of my mom's surgeries in the last seven years.  I know what the waiting is like, and none of her surgeries have lasted that long.  I feel awful thinking of Greg waiting for me for that long.

It's going to be a long day and a lot of procedures.  The "old" way to do mastectomies was to take out as many lymph nodes as they could find during surgery.  But there were a lot of issues following removal of lymph nodes, as you can imagine.  The lymph system is very important in immunity, and removing nodes disrupts the flow of the lymphatics, so any possible infection or injury in that area (essentially the whole right side of the chest, neck, arm) would be affected.  The new procedure is to only remove sentinel lymph nodes to check for cancer and if there's no cancer, no further lymph nodes are removed.  Because there are between 5 and 40 lymph nodes that drain each breast, removing the fewest number allows the best return to normal function.  In order to determine which lymph nodes are the first to drain the breast, a radioactive material is injected into the breast along with a blue dye, and then the surgeon can tell which nodes are the sentinel ones.  So tomorrow I arrive two hours before they inject me with the radioactive stuff, which happens three hours before the actual surgery starts (doing the math, that means 9:00 am arrival time).  

The surgery itself will include the sentinel node biopsy (pathology immediately examines the nodes and if no cancer, that's done; if cancer, they take the next nodes and so on until they get clean ones), placement of a port-a-cath on my left side for chemotherapy, double breast removal, and the plastic surgery.  The breast implants will go under the muscle, which lies flat against the rib cage, and so a pocket needs to be made for them to fit.  The muscle is separated and cadaver skin is sewn to expand that area.  My cells will repopulate the cadaver skin, making it my own.  A saline expander will be inserted in this pocket and it will be gradually inflated (in the doctor's office) as I heal to make room for the eventual permanent silicone implant (this is the part that can get messed up due to radiation).  The surgery to put in the permanent implant is supposed to be pretty minor.

The thing I'm most worried about after the anesthesia is the pain relief.  Not that I am worried about being in pain, but that I don't do well with pain meds.  I am horribly vomit-phobic, and even laughing gas at the dentist makes me nauseous.  My mom had issues with multiple pain meds after her surgeries (nausea and blood pressure issues) and I am so sensitive to any medications that I don't know what strong pain meds will do to me.  This is the other reason I'm opting to do it all at once--so I hopefully won't need to have surgery again!

But it's the first step in my battle, so I will do it.  And I know that I have the strength of so many people who will be with me in spirit tomorrow.

~~~

Finally, to close with some humor, I have been replaying in my mind a running gag from Arrested Development since the first meeting with the plastic surgeon.  But after yesterday, when he marked me up with the surgical lines and reality really set in, I've been thinking of it even more.  I really have this bizarre desire to pull a Kitty at least once before my surgery tomorrow:

The Breast Cancer Train

<This post is very heavy in medical stuff; I'm kind of using it as a post to have all the appointments and discussions in one place.>

My friend Dawn uses the phrase "Cancer Train" to describe the set of stops along the way from suspicion to diagnosis to treatment.  And she told me if they found something, it would be a bullet train.  Her explanation of all the stops along the way made it so much easier to understand when I had appointments and already "knew" what the next step would be.  In case any of you are in the same boat in the future and this might help, here's how my train ride went.

Monday, November 24, 2014:

Mom's in the nursing home, and we're trying very hard to break her out so she can be home for Thanksgiving.  Mira's on day two of a high-fever, non-stop cough illness (which we now are pretty sure was influenza).  I've got a paper, presentation, and homework assignment for a class and feel I'll never get them done, at least not to the level of work I am happy with.  I've got decisions to make about job applications, interviews, and positions.  And then I find a lump in my right breast.  I really don't have time for it, but know I'll worry more if I don't get it looked at, so plan to call my doctor in the morning.  

Tuesday, 11/25:

Dr. Hall has an opening at 9:15.  I cancel my office hours and head in.  He looks concerned but says it's probably nothing, but standard procedure says to get a diagnostic mammogram with ultrasound to rule out something bad.  I call to make the appointment and they cannot get me in for TWO WEEKS!  They tell me that I can call back to see if there are any cancellations, but unfortunately none of the three possible locations have any openings before that time.  I spend the next several nights waking up in a sweat, imagining awful things, kicking myself for opting out of yearly mammograms since I'm so low risk, and generally falling apart.

<insert Thanksgiving break, Mom home, Mira feeling better, some job decisions--all good, but still I'm unable to eat and am a complete wreck>

Tuesday, 12/2:

After calling every day, multiple times a day, the scheduling person "knows" me and calls ME to get me in today following a cancellation.  I leave class 15 minutes early and have the diagnostic mammogram and ultrasound.  I can tell it's not good as they do multiple re-takes on the mammogram and then the ultrasound tech calls in the radiologist.  He asks if I have questions and by this time I'm prepared on the different types of breast cancer.  I ask what he thinks it might be, and he says they can't say for sure, but due to its appearance, it's not a fluid-filled cyst and it's not confined to the ducts.  He tells me it's good that I found the lump on my own, and that they need to do a biopsy.  I burst into tears in the nurse's office and while there were no openings for over a week (again), she takes pity on me and squeezes me in over lunch hour two days later.

Thursday, 12/4:

I have a guest speaker scheduled for the class I teach, and without explanation, I ask him to take over the entire class for me (Thanks, Everett--I still owe you for that!) since the biopsy is at the same time.  If this were not my breast, I'd be fascinated by the procedure.  My right breast is numbed and a tiny cut is made under my armpit.  I can watch on the ultrasound screen as the radiologist directs a huge needle into the lump, then clicks a button and it shoots through the mass, collecting a sample.  While looking on the ultrasound, he sees several other smaller "areas of concern" (I can see them, too) and so he collects them as well.  Then he puts two small titanium clips to mark the areas where he took the biopsy (they will show up in ultrasounds, x-rays, maybe MRIs, too).  The radiologist tells me that I did a great thing by finding the lump on my own, as it would not have shown up on a screening mammogram at all.  He says that he will recommend, if it is positive for cancer, that I have an MRI to determine the extent of it, since he found those extra spots on the ultrasound and to look at my other breast as well.  He hands me a prayer card (which freaks me out a little) and tells me that he hopes it brings me comfort.  I get an ice pack and orders to take it easy and not lift heavy things for two days.

Friday, 12/5:

I'm a complete wreck.  I know they will call with the biopsy results today.  Greg has to work.  My mom's home and my mother- and father-in-law are coming to visit and want to have lunch with me.  I'm afraid if I eat lunch, I'll vomit.  I'm making bargains with anything and everything that, at the last minute, it will turn out that this was just a terrible mistake and it's nothing (though I'm pretty sure that's not the case).  The phone call finally comes just before the kids arrive home from school.  And when I receive the diagnosis of invasive lobular adenocarcinoma, Grade 3, I am suddenly fine.  Unfortunately, I can tell by looking at Greg's face that he is not.  He's been so strong the past two weeks as I've fallen apart, that I really don't expect this.  The nurse tells me that a nurse navigator will call me yet that afternoon to explain the next steps.  She encourages me to NOT look things up on the internet, as there is a lot of misinformation out there and the navigator will suggest some good websites.  When Debbie the nurse navigator calls, she is very matter-of-fact and tells me exactly what will happen next.  She also tells me what a great thing I did by discovering the lump on my own and how the earlier it's found, the better the treatment options and outcomes.  She explains that I will likely have surgery followed by chemo of some sort (depending on the pathology report), maybe radiation, and possibly hormone therapy.  The types of each will be determined by my team at a later date.  For now, I need to schedule a breast MRI and set up a meeting with the genetic counselor.

Tuesday, 12/9:

I meet with the genetic counselor, who sketches out a pedigree for my family, including all cancers.  I hadn't realized how much cancer there is until seeing it drawn out.  She explains to me that only about 10% of breast cancer has a genetic link, but since I'm young (defined as under 45; funny I turn 45 the next month), they recommend genetic testing for known hereditary breast cancers.  I can choose to test (via NextGen sequencing) only the 5 most common, the 17 with at least some connection, or an even larger panel of 40-something, with many vaguely correlated.  I opt for the middle plan, which starts with the five most common (BRCA1, BRCA2, TP53, PTEN, CDH1).  Not only does this give potential information for my daughters, but many of these are associated with cancers in other parts of the body, and so if I'm positive for them, I would be more closely screened for the other cancers.  If none of these 5 are positive, then they will test for the next 12 (ATM, BARD1, BRIP1, CHEK2, MRE11A, MUTYH, NBN, NF1, PALB2, RAD50, RAD51C and RAD51D).

Friday, 12/12:

It's MRI day.  I'm not a big fan of medical appointments, but the number of them I've had in the last three weeks has made them almost routine.  However the MRI machine scares me. Several years ago I had to have a CT scan to examine a spot found on my kidney during a routine ultrasound to check my spleen due to my blood counts (yeah, once you start down that path, it keeps going...).  Although only the lower part of my body went into the machine, and it was very quick, I still had a panic attack while undergoing the procedure.  MRIs circle your whole body, are terribly noisy, and take a long time (45 minutes to an hour, I was told).  The nurse navigator had suggested I get a prescription for Xanax to get me through it, and I did.  I opt to listen to music and choose a "Best of the 80's" CD to keep me company.  Whether it's the music, the Xanax, or the very nice technician, I make it through.  Greg and I are able to see the MRI results right away and are very happy to see that it only shows the spot(s) in my right breast with no evidence of cancer in the left breast or the lymph nodes.  They still aren't able to tell if the cluster of spots is multiple tumors, or just parts of one bigger tumor (and it doesn't impact treatment, so not a big deal), but nothing found today changes the plan, and we're all pretty happy with the results.  We are also given the results of the pathology.  Both areas are the same type of cancer--in addition to being invasive lobular and Grade 3, they are positive for estrogen receptor (ER+), progesterone receptor (PrR+) and Her2-Neu (Her2+) and Ki67 positive.  Appointment to reconvene next week with the whole team for the full treatment plan.

Wednesday, 12/17:

This is a big day.  Not only is it the day of the team meeting, but it's the day Cara comes home for winter break, and therefore the day we tell the family.  

After dropping the younger kids at school, Greg and I head to the Cancer Center at Columbia-St. Mary's and spend the next three hours in meetings with the Nurse Navigators, the surgeon, the medical oncologist, the radiation oncologist, and a representative from the American Cancer Society.  All of the team is wonderful, talks to us at our level, is warm and confidence-inspiring.  AND they give me a graduation card, signed by everyone.  All our options are discussed, including:

Surgery: 

I can opt for lumpectomy or mastectomy; there is no difference in outcome between lumpectomy with radiation and mastectomy; can do just right side, or prophylactic bilateral mastectomy; can choose no reconstruction and use (or don't use) prosthesis, or opt for reconstruction;  reconstruction can be done at time of mastectomy or later; reconstruction can be with implants, or by transferring tissue from another part of your body (belly or butt or back)

Chemotherapy:  

The final choice will wait until post-surgical pathology, but most likely is:

Adriamycin and Cytoxan IV every 2 weeks for 4 cycles (8 weeks)

Paclitaxel and Herceptin IV every week for 12 cycles (12 weeks)

Herceptin IV alone every 3 weeks for the rest of the year

Alternately, after getting final pathology, the chemo may be changed to:

Taxotere, Carboplatin & Herceptin IV every 3 weeks for 6 cycles (18 weeks)

Herceptin IV alone every 3 weeks for the rest of the year

Radiation:  

If I opt for lumpectomy, radiation must happen and would be daily (M-F) for 6 1/2 weeks.  But at this point there's no evidence of the cancer being in the lymph nodes, and so if I opt for a mastectomy and the LN biopsy is negative, I won't need radiation.

Hormone Therapy:

Tamoxifen (blocks the estrogen receptor) by pill for five years.

We have a thorough diagnosis, some decisions to make, and an idea of what the next year to six years will look like.  AND we have the utmost confidence that we will beat this bastard.  It's time to tell people.