SoFarSoGood

Low-high day today.  Had some insomnia in the night and started googling like crazy to find out if my hair would grow back beyond super short after chemo.  Maybe I’ll love it short but all of a sudden this seemed important.   I’m not sure what else I googled but I’m sure google can tell me.

Found out early this morning that my lymph node biopsy was positive for cancer (just one was biopsied because that is what the MRI indicated) which led to a slightly more emotional day than planned. Chemo still on track to start Friday afternoon though so really nothing has changed except hearing someone say “it is cancer” is not something I’d wish on anyone.

Later in the day my lovely friend Susan came by with some amazing food (and realized I had not eaten all day) in the afternoon and had a nice visit.  Finally, after 6, I made it out to the barn for my second ride on Banner and he was super relaxed in the ring and on a trail ride with some horse/rider friends and a trio of dogs.

Then I lost my keys for about 25 minutes and they were in the place where I put them and first looked for them.   I’m starting to think “chemo brain” may not actually have anything to do with the chemotherapy actually happening…my hard drive seems to be full.   Wish I could store some of my brain data in the cloud.

 

For those who want medical updates:

Today I heard back that I do not have the BRCA gene mutation – very Good news for my female relatives and their children and so on!

April 13, at 8:30 am, I have an MRI biopsy in the morning hopefully with Valium involvement, a mammogram to confirm markers from biopsy where they should be (query wtf would they do to me if the markers aren’t in the right place? Okay I’m not going to think about that now.) My dear friend Melissa is accompanying me to this day thank goodness cause they won’t give me Valium without proof of a driver!

At 1:00 I will head in for my first chemo treatment which entails blood work each time an hour beforehand. The chemo cocktail I will get is carboplaxin and taxol. I will be getting a lower dose than many chemo patients get because I’m getting weekly treatments for 12 weeks. Supposedly this means I won’t get as knocked out by the treatment. I sure hope so and plan for that, but, since everyone is different, time will tell.

The next 8 weeks I’ll get another cocktail, AC I think (?), biweekly. After that, I will recuperate for 6 weeks (working, other life stuff, and doc appts of course) before I have surgery. This will likely be a mastectomy since it appears there is cancer in more than one location of my left breast. Surgery can take 4-6 weeks to heal and then I’ll start daily radiation for a month. Following that will be reconstructive surgery. I haven’t mapped this all out on a calendar yet, but I will. I think I’ll be able to work during our next Duke Law leadership weekend – our first with our new Dean-designate Kerry Abrams at the helm. I will definitely aim to have surgery after that since I’m missing the board meeting and Reunion Weekend this weekend and I’m a bit sad. But, I know I need to get this treatment show on the road! Sooner I start the sooner I’m better. I imagine I will learn so much about life, and so many other things, along the way. This is what an implanted chemo port looks like 5 days post installation. Nasty huh?

After I got my port installed, I did the typical thing one does (not) and went home and talked to a vet about a horse I was looking at, talked to my trainer for a while, talked to my pal Amy visiting from Dallas and decided to buy a horse!!

I know this probably seems a little nuts given my diagnosis but those who have known me since I was a little kid know I’ve loved horses since before I even knew how to say the word horses. I called them “frissies”.

Banner is an off the track thoroughbred who was abundantly slow and his trainer wanted to find him a non racing home. His pedigree indicates good potential as a sport horse and while I was looking before my diagnosis I started waffling afterward about the commitment. With some reflection about what brings the greatest peace and joy into my life, I decided that this might just be the best time to find a new equine partner to care for and bring along. I looked for one that was quiet and easygoing. He’s young so I will take my time. One of the beautiful things about the time I spend with horses is that I am completely in the present moment when I am with them – whether handling them or riding them. It’s completely replenishing like no vacation I’ve ever been on. I can’t be in my head (or if I am I likely to end up on the ground) and there’s just this peace that settles in when I’m completely aware of my body and movement and the horses response to my actions; whether it’s grooming them or slowly squeezing my inside ring finger like I’m squeezing a sponge and slowly releasing while I’m trying to get a horse to soften into the contact. An added bonus is that you can’t spend much time with devices when you’re with horses. Or thinking about much of anything but what’s right there in front of you. *Except maybe that time you forgot you left your dog on a donkey for 20 minutes. To be fair I was discussing with a friend who is also a surgical nurse whether or not it was true that my port could flip over or something. Glad I asked her after I was done with my first ride on Banner.

I know Banner will also help with me as I fight cancer and heal; he’ll enrich my life physically, emotionally, and spiritually as we (along with my canine, donkey, and human friends and family) move through the next year with as much grace as possible.

The dogs will love it too because – more farm running around and donkey riding time! 💕

On Thursday, Melissa and Liam (who was a most patient kiddo spending a day of his spring break at the Duke Cancer Institute with me!) picked me up to take me to my lymph node needle biopsy which was done using ultrasound.   Dr. Walsh was great and now I’ve forgotten the name of the nurse or tech that was there but I was pleased to learn they’ll both be doing my MRI biopsy this Friday.   I asked Dr. Walsh if she could find an MRI doc to explain the procedure to me because based on what I know about MRI it didn’t seem like a simple way to get a needle biopsy…and it was scheduled for 120 minutes so I wanted a preview sooner than 5 minutes before it starts.   She also does MRI so explained it step by step and strongly advised bringing a driver so I can have valium.   After spending 30 minutes getting the prior MRI done, laying on what can only be described as a poorly designed plastic massage table with the boob area cut out, I confirmed I would bring a driver and might need extra valium.

The lymph node biopsy results should be back today or tomorrow…impatiently waiting…

Thursday afternoon, because I am a cancer-fighting overachiever, I was scheduled to have my chemo port installed.   Liam and Melissa came with me again and Melissa awaited contact from Amy when she arrived via Uber from the airport.

This turns out to be way more of a procedure than I anticipated.   I mean I knew it was a surgical procedure but ouch.   They did conscious sedation but put a little fentanyl in me and I get real chatty so I watched the fluoroscope monitor the whole time and chatted with the surgeon.   Even though the procedure got started late and he clearly was having a very busy day he was quite pleasant to chat with and explained some things to me and at the end, as I was losing my battle to stay coherent with all the drugs on board, he laughed at what I’m sure were nonsensical wisecracks on my part.

I was excited to wheel out to recovery even though they wouldn’t make my cart zoom any faster despite my encouragement.   Soon, Melissa, Liam, and Amy arrived!   The nurse, Gail, was telling them I was all loopy from the fentanyl and eventually, she realized I was just being nutty, because well this was a nutty situation, and she let me go.   I got to go on what I’m sure will be the first of many wheelchair rides!

It turns out that port surgery is actually surgery.   I was told I shouldn’t pick up anything heavier than 10 pounds with either arm that day…and that I shouldn’t make any important decisions that evening.   Oops.   Wrong day to have a new horse vetted I guess.   Luckily, with counsel from my awesome trainer and friend Jeannette Ford and Amy’s outside legal counsel from a non-equestrian perspective, I feel I made the right decision!

I’m not sure either of us expected it but basically Friday I was knocked out from painkillers because it hurt (!) and spent most of the day on my bed icing and dozing in terrible painkiller fog.   I switched to Tylenol by Saturday whew.  At one point I said to Amy, “I’m so glad you’re here.  But it’s so weird because you are here because I have cancer.   And, you’re cleaning my house?!”   All of that is still so true and makes me choked up.

This weekend once again reinforced how lucky I am to have amazing friends to nurse me, chastise me if I try to pick up something too heavy (and of course I do this), advise me on big horse related decisions post-surgery, and just hang out with while I walk this path.

That doesn’t even account for the many wonderful family, friends, and friends of friends who have reached out with offerings of love, prayers, juju, healing thoughts, offers to give rides or sit with me during chemo or other times I need company (thank you people because I will!)   Also so many who have shared their own experiences with breast cancer.  I haven’t gotten back to some of you because I am experiencing a lot of overwhelm as you can probably imagine, but I am so grateful and your messages lift me up and are helping me get through this very impatient period before I start the treatment to healing.   Thank you, thank you, thank you.   I feel so so so very blessed.

Wow.  So much has happened since my first post.  Last week I was experiencing so much information overload that I didn’t know which day was which most of the week – I did make it into the office on Monday and Wednesday which was great.  Tuesday was a day of medical diagnostics (PET scan, EKG, genetic counseling/testing, MRI of breasts (um, interesting experience), ultrasound of same  – during which began brief period of me being super duper frustrated when they told me they found a “new” growth I was well-aware of and had talked to my surgeon about days earlier…it’s growing fast!!   Radiology wanted me to have an ultrasound biopsy of a lymph node and an MRI biopsy of the left breast, which couldn’t be scheduled for another week and a half.   They also told me that my chemo had been scheduled for April 20th when I was fully expecting from my prior conversation with my medical oncologist to start the 6th or  9th…at that point I got mad.   I’m still sort of mad about it since it’s pretty much obvious to me that the growth in my left breast would be the same cancer as the other mass since it’s triple negative breast cancer and known for growing fast and basically I can feel it growing.   At any rate, I pitched a minor fit and thankfully by the time I was done meeting with my med onc (that’s the chemo doc)  and her very calm and kind nurse, I at least got the chemo switched to start the same day as the MRI biopsy.   Since last Tuesday any casual observer can see the size difference in my breasts which was not the case that day…so that is really pretty strange to experience and I’m ready to get poisoned ASAP.  Sounds crazy, right?

 

Grace

On Easter Sunday, it will be the two week anniversary of my discovery of a lump that no woman wants to discover.   I rolled over in the middle of the night and felt some pain in my left breast.  I felt it and it felt weird.   I felt my right one.   It was clearly extremely different, so much that I wondered if one of my dogs jumped on me and gave me a hematoma, or maybe, in all my natural grace, I’d walked into a wall or something.   As I fitfully tried to sleep and alternately cuddled my pups Scooter and Sister for the rest of the night, I knew I’d be calling my wonderful primary care physician in the morning.

Fast forward I have a biopsy and it’s positive for invasive ductal breast cancer.  My intuition told me it was some form of something not good as I waited a week for the results, but I still spent March 19th mostly crying and calling/messaging family, friends and colleagues.   I’ve been humbled, more than I can express, by the outpouring of love and support I’ve received from folks.   Jennifer Weaver made it possible for me to get through the first day at the Duke Cancer Institute.   It was a lot.  The biomarkers came back and I learned it’s triple negative breast cancer – about 20% of breast cancers are this fast-growing type which explains the lemon like mass that continues to grow.   Thank goodness for Jennifer…she took notes which allowed me to listen and I was able to get a pretty good handle on the order of go for tests and treatment.   I’m so blessed with so many amazing women in my life.   Also, Weaver takes incredible notes!!   Ah, god bless the lawyers.   Yes, I just blessed myself.

This weekend I bought my first wigs.   Seriously they look so good I might just shave my head early and never go back to my boring real hair again.   Though of course I’m sure it will be emotional to lose it and so quickly.   Props to Amy Jackson for coming with me (and Scooter) and making it fun…and for the giant vat of healthy delicious lentil soup!!

If all goes as I expect in the short term, Melissa Vetterkind will generously give up her day to get me to DCI at 6:45 (in the actual morning!!) for my PET scan, Echocardiogram, an MRI, an ultrasound of lymph nodes, genetic testing and counseling…and then I will meet with my medical oncologist, Dr. Gretchen Kimmick.

I think the med onc appointment is to confirm my chemo protocols based on the testing – as of now I’m told I’ll have weekly treatments for 12 weeks, biweekly for 8, then recover for 6 weeks before whatever sort of surgery is indicated at that time.  Then 4 weeks of daily radiation.   And then possibly surgery for reconstruction if I have a mastectomy.

Jeesh… I guess we know the answer to what my plans are for 2018.   I’m planning to continue working, riding, and exercising as much as I can through chemo.   My surgeon said she knew people who did crossfit and triathalons through chemo so…we’ll see.

Aside from the people I’ve already named above, and Amy Grainger June (!!) who is coming to town Thursday for the first chemo day Friday and the weekend, there are too many people to list who have reached out to me or my family and I’m so so humbled by the love and concern.    It is apparent that almost no one hasn’t been touched in some way by cancer of one form or another.

Over this past year, I dove back into studying and trying to maintain a regular mindfulness meditation practice.   It is ironic in that it is pretty good training for managing through difficult health issues in addition to all the things it can add to an otherwise physically healthy life.

I have this saved in my phone and look at it often…a reminder for me now too.

May this suffering serve to awaken compassion.   Bodhisattva

This year is also going to be a year for me to learn to accept love, support, concern and medical care from others…with grace.   So, thank you, to everyone who is or will be a part of this healing journey*.

*I despise the word journey so please feel free to suggest alternative words!!