SoFarSoGood

Hello! So the weeks since my mastectomy surgery have flown by and I would say that’s a good thing.

I’ve healed up well and over the course of my recovery seen so many awesome friends and colleagues and enjoyed so much wonderful food and fellowship.

I eventually started driving, started working, had a good visit with my mom and her husband Brett, got my teeth cleaned, went to orthopedist and opthamologist, started riding again (!!), had some physical therapy – my of motion great and got the all clear to ride and do whatever doesn’t hurt which is what I’d been doing. I also got summoned for jury duty. Ha. Here is a picture of Scooter. Sitting on some paperwork including the summons.

Just today I was measured and manipulated and marked up with a Sharpie in all sorts of ways while in a CT machine (will try to attach photo) for my radiation treatment which starts next week. I also got a call from my surgeon that she had a follow up discussion on the pathology with the pathologist as well as input from the Duke Cancer team tumor board. I haven’t had a chance to talk to her yet but she said there isn’t anything surprising so I suspect that means all the cancer cells found were of the same triple negative type.

Anyway, all is well, although I am struggling to find some sort of routine amongst all this. I know this will take time and I’m having to remind myself daily that this is a process and I need to stay here and slow down and savor all the lovely moments I get to have while (I gotta be honest) I’ve found myself in the past week chomping at the bit to get going with the rest of my treatment so I can look at all of this in the rear view mirror at wave at it. But good news is that I start radiation on Aug. 29th. 30 treatments over six weeks. Some time after that I’ll start oral chemo. Hopefully by next May/June I will be all set for reconstruction.

Given the reality of the length of my treatment, I am working on slowing my roll a little because I know, just like all of us, all I have is today and right now. And today, like yesterday, overflows with that for which I am grateful.

One more thing – if you’re waiting to hear back from me you are not alone, I am sorry for the delay, and I am grateful for you reaching out. I’m having a hard time keeping up with correspondence personally now that I’m trying to focus back on keeping up with work. But I love you and I’m grateful for you and I will be in touch!! ❤️

Oh and if anyone has any good ideas for dealing with nighttime hot flashes let me know. One of the cascade (my radiation oncologists excellent word choice) of side effects of chemotherapy. I count myself lucky in terms of my side effects but sleep deprivation is just mean! Wait so are styes. Those are a thing apparently as the cells recover. A sign my body is healing. Gratitude for that.

August 3, 2018

This week was a strange week for me.   I guess every week has been strange, in it’s own way, since March 11/12^th when I discovered the tumor in my breast.   It’s gone now, along with my left breast and my lymph nodes on the left side, and I feel like I should be feeling better like all “victory over cancer!” but somehow I don’t.  Maybe someday, but not today.

August 6, 2018

That entry above was a few days ago and I apparently lost interest after that final sentence.   I’m not really sure why it was a rough week but I did get a good solid plan for my future treatment on July 30.   Initially, I felt a  mild elation at having a plan, by the next day I found myself feeling pretty meh about the plan and having a lot of anxiety about all the unknowns:

• 4-6 weeks of daily radiation – how will I, and my skin, respond to radiation (will I be able to wear some sort of bra that I can wear under clothes to a work meeting?), and how long will it take me to recover to get started on the next step?;
• 24 weeks of Xeloda (8 x 3 week cycles) – how will my body respond to six months of oral chemotherapy? Let’s hope I don’t get the hand/foot syndrome that has made some people lose their fingerprints?! But also how much will it impact my immune system and energy?  How long will it take my immune system to recover for the finale of my treatment?
• And the finale, a major surgery (plus two minor follow up surgeries) to reconstruct my breast using skin/tissue from my body. This will include a longer recovery than the mastectomy but I’ve talked to patients who have had it and there is high satisfaction.
• After I get through that surgery and recovery there will be 10 years of tamoxifen or some drug that shuts down my ovaries. Both of those have different side effects I’ll need to consider – at a later date.

Of course, as anyone following my story so far has seen, everything is always subject to change with this sort of medical treatment.  And that’s okay.  I think I just needed some time to process it all.

Also, I rode my horse Banner this weekend!!   Just walking and a tiny bit of trotting.   He was lovely and it still confounds me how much more complete and full-hearted I feel after a ride on a good horse – even a very simple short ride.   I was a paranoid about lymphedema so didn’t sleep well Saturday night as I was trying to find ways to sleep with my left arm as elevated as possible.   But it was totally worth it!   *note I got a prescription for a lymphedema sleeve today and will get it filled ASAP because I need my equine therapy!

One weird side effect note – yesterday I started getting a feeling of itchies kinda under my arm toward my back and of course went to scratch it and it’s numb so I can’t really scratch it?!   So weird.   Apparently this is not uncommon and is believe to be the work of nerves that are repairing themselves.   I certainly hope that’s what they’re doing!

Great news this week on two fronts – I am back to working (mostly from home for now but can’t wait to get into the office) and I have my mom and her husband Brett here visiting from Zagreb, Croatia!   So that will be fun to fill in some activities with them when I’m not working.   It’s been a long time and it’s great to have them in town.  Looking forward to the rest of the week and weekend.

Thank you, again, to all the wonderful folks supporting me on this path to a new way of living, post-cancer, hopefully for a very long and joyous time.   The love I have felt from near and far buoys me through the lows that I have and I know are inevitable.   Thank you, thank you.   So much gratitude and any time I think of all of you my heart is full.   Sometimes on this journey is needs a refill!

I’ve had a lot of folks, so many, ask what they could do for me.   Many have given me rides, helped me recover, gone to treatments, visited and told me stories, brought me delicious food, and so much more.   But many are far away.  I never imagined I’d have a gofundme but I never imagined I’d be faced with working a reduced schedule for a long time along with lots of cancer-related expenses despite my good fortune to have decent health insurance.   BTW if you have Duke Select you might want to change before you need to see lots of specialists or have lots of imaging.  But of course you don’t know if you’ll need that so nevermind.

At any rate, I have a gofundme now if you’d like to help any amount is greatly appreciated.  I’m hoping this will last me throughout the next year…and that I won’t be out of work too much either.   I’ve had a lot of anxiety about this as I’ve rebuilt my financial life after a very difficult period marked by several layoffs around 2008.   As my friends who wanted to start this inquired about what I might need I didn’t really know how to calculate it.  Right now I just don’t know what the future holds.  I guess none of us do, but I am getting a crash course in letting go right now!    Thank you for considering pitching in if you can.

https://www.gofundme.com/ftj8x-help-sandra-beat-cancer

 

I’ve had a lot of inquiries about how things are going – I just wanted share a quick chat I had with my friend Amy that would give everyone an overview of where I am as I await a further discussion with my oncology team about the pathological findings of my mastectomy and lymph dissection.   It’s hard to write about this right now as I don’t have a lot of information right now, and the information I have is very technical – I almost wish I could just upload the pathology report here but I don’t know how.     I feel great, physically, no pain just some fluid retention around my lymph area on the left.  If I didn’t have a drain still in my chest and doctors precautions I’d feel fine to go out and ride my horse today.  But, I won’t.   Anyway, this will give folks who’ve been wondering a chance to know some of what’s going on in my body and mind.:

Checking in to see how you’re doing?   Amy

Waiting around wondering if anyone from oncology is going to call me. I got most of my pathology from the plastic surgeon and it looks fairly ominous in terms of the fact that there’s a large lymph node tumor that apparently didn’t respond at all to chemo and multiple sites of invasive cancer in the breast tissue as well. There was some cell death, or necrosis, but a lot of activity was still going on. Not sure what they’ll decide is next but the plastics doc said he’d be surprised if I didn’t have more chemo. I researched that a bit and woo-wee this is experiment world…it is going to be a challenge to decide what to do I don’t want to face the end of life as a human guinea pig but I am willing to try some additional treatment if they think it will help and the side effects aren’t horrible. But I really want to be able to enjoy life as much as possible. So that’s important too. I’m going to inquire about clinical trials too. But talk about feeling like a human lab rat. I’m okay though, it’s just a surreal time. Hope you’re well. Hugs, Sandra

So they are saying it’s spread to a lymph node that they did not remove in the surgery? They hope to treat that with more chemo but not sure what kind to use? Amy

No the lymph nodes were removed. It’s just that I don’t have a “complete pathologic response” and really don’t have much of a response at all – which means there are likely cancer cells floating around my bloodstream looking for places to land so they will want to treat my body again systemically. My type of BC has a very high rate of recurrence and generally recurs at stage 4 often in visceral tissue like the brain or pancreas. That is why the survival rate is low. The big new progress they made with TNBC is doing the type of chemo I had pre-surgery to kill the tumors…and in my case, which is supposedly very rare, it didn’t work. Me

oh shit. Ok. that explains a lot. Amy

I don’t really have answers to questions though and the research I’ve done is nothing if not completely complicated with medical lingo – there’s a lot of research on this type of cancer because it is the one for which there’s no targeted treatments – but when you read the studies it’s like “oh this was a great study because 27% of the patients enrolled lived 2.5 months longer without disease progression…etc. Me

reading may not be the best idea but I am the type who does that too. Amy

I just was trying to see if there were any options for refractory or chemo resistant TNBC. And of course people who’ve had it are telling me all this stuff about new treatments. Sandra

I am sorry honey. I can’t imagine how scared you must be feeling right now. Amy

I actually read very little about cancer. But I want to work on accepting what is happening and making good decisions for myself. I certainly won’t give up but I also want to die well, when I die. Hopefully not soon but it’s out of my control. Sandra

well, the road ahead is indeed tough but I and many others are here rooting for you. Erik wants to come back over and do more to help you out. Maybe we can come this weekend for another visit if you are up to it. Amy

Thank you, and him. He is such a good empathic man, not that common! I will let you know as the weekend approaches. I’m super pissy because I can’t drive because my stupid second drain is still in – I’m close to not complying with medical advice because it doesn’t seem that important right now. And I want to do more things.

I really appreciate all the support and love – but then that also makes me sad because I don’t want to disappoint people if somehow I don’t end up being one of those miraculous recovery people! Hopefully I will. I don’t feel like my body is sick or ready to die. And yet I apparently am sick.

Honestly it feels a lot like I’m in a dream right now. Sandra

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Many thanks to all who have offered help, food,  support and love.  We’re setting up a Calendar sign-up  using Sign up Genius so that we spread out the support over Sandra’s recovery.

Want to help, but the options or times don’t work for you?  Or want to help but you are out of town? Contact Jennifer at 919-931-7324 and she will work with you to coordinate a time or way for you to show support.

Click HERE TO SIGN UP and Join Team Sandra!

 

This past week was possibly the most challenging of my entire life.   I struggled since hearing the MRI results to control my attention and to try to prevent my brain from wandering too far down the path that threatened to consume me – fear.   While at the same time knowing it is healthy and normal to be afraid and that I might get some sort of freedom by trying to stay with the fear I was having weird superstitious feelings that if I let myself consider the possibility (that seemed very real based on the MRI) that my cancer may have gone on a wild adventure in my body while I was getting chemo…that somehow that might make it be real.   I knew the cancer was doing whatever it was doing, in my rational mind, but my superstitious side apparently didn’t want to think about it and definitely didn’t want to say metastasis out loud.

I had a PET scan Friday a.m. and Melissa and Jen both came with me at my request.   I was a bit grumpy and I realize now this was because I was stifling my fear.   But…fast forward to my surgeon calling at about 5 to tell me the PET scan didn’t show any new cancer and even better, the newly seen masses from the MRI, didn’t show up on the PET scan at all!!  So hopefully that means it’s just dead cancer cells.   I think my surgeon was nearly as surprised and relieved as I was.   I was so relieved and the waves of relief have continued every time I think about it and look back toward how I dealt with the past week.

My surgeon said she thinks it makes sense to continue with the left mastectomy and I’m perfectly okay with that…it doesn’t seem nearly as scary now that I know I’m not riddled with cancer cells.   I’ll meet with my surgeon and medical oncologist on Monday morning to review the imaging and prep for surgery the next day.   There may be some discussion about whether to continue with chemo after I heal from surgery or go straight to radiation.

Banner (the horse) has a minor (hopefully) injury from running around scared of fireworks with his pasture mates on the 4th of July so I’m off to tend to him.  Did I mention I despise fireworks?   I have been lucky to have Becca out at the farm where he’s boarded to tend to him – while I was busy yesterday and many other days.   She’ll be riding him and taking care of him while I’m out for surgery too – what a blessing to have her wanting to work with a young horse and me having a young horse who could use more handling and riding.   He’s gaining more muscle and becoming more balanced and even better behaved every day.

Whew.  What a week.  So grateful.

Things were going pretty well…and I had an awesome weekend visit with my brother that included lots of fun activities, people, animals, great food and great conversation. So things were pretty good. On Sunday morning I had an MRI because I thought I noticed some changes in the feel of the tumor in my left breast. My onocologists measurement was slightly larger than the previous one as well so it seemed prudent to rule out growth. My surgeon assured me it is very uncommon for cancer to grow during chemo.   She had only seen one case in her career, but now make that two.   It turns out I have uncommon cancer.

Last night the surgeon called to let me know that rather than the original large tumor growing, the MRI showed 2 new growths that had formed since the beginning of my cancer diagnosis. This wasn’t what I was expecting, of course, so I didn’t ask all the right questions as I’d started crying and of course was trying to think. However, I learned that my case was presented at conference (this means the whole breast surgery department studied my case and weighed in) and the consensus was it would be best for me to have surgery as soon as possible. Since I had AC last Tuesday my immune system needs some time to recover…but two weeks from today I am scheduled have mastectomy surgery on the left side. I will also undergo another PET scan next week…to be sure there hasn’t been any metastasis to other parts of my body.

So…I suddenly feel like I need to have all of my life in order in two weeks. Hopefully, I can finish up my house refinance paperwork, get my will & other planning docs in order, return anything I’ve ordered online that I don’t want (haha but no seriously), buy more pillows to prop up my arm on the surgery side, spend as much time riding Banner as I can, and catch up on my laundry before July 17. The unknown of how I will be able to function post-surgery is sort of vexing but I remind myself that people do this every day. Every single day. And I can do it too.

Feel free to send prayers, good vibes, jingles, healing thoughts, etc.   Thank you for all the love and support.

I have several items to write about but…for now in brief:

I just had my first working lunch with a donor where I was wearing a wig.  I didn’t realize how awkward I feel in a wig pretending like I’m not wearing a wig.  It feels strangely inauthentic.   Both the donor and the faculty member present know about my cancer battle and as we said our goodbyes asked how I was doing.   I just blurted it out, “I’m doing great but I feel really weird wearing this wig!”   I was assured I wore it well but I felt the tears jumping to my eyes.   I’m happy I caught them.   I’m not sure why it feels shameful to be wearing a wig.   Logical Sandra says that makes absolutely no sense.   So, after it was all over, I realized, wow, I am braver than I realized.

Also, if you go to lunch with three men remember ain’t nobody gonna tell you you have a ball of goat cheese on your face.   Just sayin’.

Quick update – first – wow the weather in NC this week is gorgeous!!  A respite from the humidity which I’m sure will be back soon.

And now for the medical news.  I went to see my medical oncologist today to discuss chemo plans given the neuropathy I’ve experienced and how much of the taxol/carboplatin I’ve gotten.  My doctor was happy with the amount of shrinking we’ve seen with the tumor – although she didn’t note much change in the past week so she feels like it’s a good time to switch to the AC chemo.   So, I thought I was going to have to make a difficult decision, and it turned out to be easy!   Whew!  I start next Tuesday every 2 weeks for 4 treatments.  That’s assuming my neutrophils (white blood cells) are back up to fighting form – they were actually lower today than last time I had blood work done but that is because Taxol and carboplatin are still in my body doing their thing.  Along with AC I’ll get the previously mentioned Nuelasta which will prop up my white blood cells.  Here’s more information than anyone but someone getting this needs to know: http://www.lbbc.org/learn/treatments-and-research/chemotherapy/common-chemotherapy-regimens/ac-adriamycin-and  I’m most curious to see if my eyebrows and lashes fall out…apparently this is common.  Fingers they don’t, but most importantly, fingers and toes crossed that AC continues to kill off any cancer cells that remain.

 

I have an appointment with my surgeon on July 23^rd and my last AC treatment, if everything goes as planned, will be July 24^th!  This is a month earlier than I had expected.  I’m not sure when my surgery date will be but, again if everything goes as planned, it will likely be 4-6 weeks after my last treatment so late August/early September.  As far as my surgery goes (stop reading now if you don’t want to know surgery details) I expect to be having a full mastectomy of my left breast.  When it is time for reconstruction, I may also opt to have a mastectomy of the right breast at that time.  I haven’t decided at this point but the option is there.  It sounds like, for me, the best reconstruction option is called “flap” surgery or DIEP – which uses the patients body fat in other areas, usually the stomach or sides of torso, to reconstruct the breast.  I’ll spare readers the details but Duke has one of the best surgeons for this procedure.  When I first read about it it sounded so Frankenstein-esque my initial reaction was “no, no, nope, no” – it freaked me out a bit.  However, after educating myself more both with my own research and talking to some folks I know in the medical field and my surgeon, it seems like the best option for me.  One primary reason is because I have to have a 4 weeks of radiation after surgery and that cannot be done successfully over an implant or stretcher for an implant.   At any rate, I won’t have that surgery for a long time because after radiation I’ll need a good 6 months for my skin to heal prior to the flap surgery.

 

Yesterday after my appointments, I was able to connect with a new friend, Carol, who has been an amazing resource to me!   She’s gone through TNBC treatment at Duke Cancer Institute over the past few years, and has come out the other side doing great.   She was in town from up north for follow up appointments at DCI when I was there – and was going to come to chemo with me but that didn’t work out since I didn’t get chemo after all.   However, we got to visit for a while at DCI, and I inherited some of her “cancer wardrobe” including a “shower shirt” that sounds like it will be a lifesaver after surgery.

 

So…big hard medical decision was unnecessary!  Jen and I were both like, wow that was easy, so…onward I go!

I’m feeling a lot better as of Sunday evening.   Over the weekend I attended a memorial service for a colleague who passed away recently from uterine cancer.   I didn’t know Adriane well but the remarks from her many friends and family were consistent with what I knew – smart, funny, a straight shooter and slightly intimidating (if you didn’t know her well.)   There were many lovely remarks directed to her two children, Petra and Theo, which made it a bit of a tear jerker but was really touching.   Many Duke Law staff were there including our Dean David Levi.   It was a beautiful service and I’m glad I went although I was a little unsure if I’d come apart…I did not.   Thanks to my friend and colleague Halley for picking me up so I didn’t have to go alone!

After that, because Adriane was generous in teaching me about wigs when I was first diagnosed, I made a trek to the wig store in Wake Forest, Angel Wigs, to get some styling tips as well as a little trim and wave in one of my two wigs.   It seems like the right thing to do.  I met several other women wig shopping and had a nice time visiting with folks.

Later on Saturday I caught up with Melissa and about an hour later had a surprise visit from my buddy and neighbor (whom I rarely see) Jon Davis, and I finally got to meet his awesome girlfriend Trish.   They went to high school together at the science and math magnet school in Durham.  Isn’t that cute?  I know.  Anyway, it was super fun to hang out with them and I do like a surprise visitor when they don’t mind that I’m usually in some form of pajamas these days.  Jon decided my Blu Ray player is lacking so gifted me a Roku stick today.  I haven’t installed it yet but I bet when I do it’s going to be one of those things that I can’t imagine I’ve lived without.   Sorry about that preposition…without which I’ve lived just sounds too…formal?

Sunday was sleep in day for me!   I needed it after a busy Saturday.   Late in the afternoon I finally went to go ride my horse Banner, whom I hadn’t seen for a week.   Thanks to a wonderful gal at the barn, Becca, who has been working with him daily, he’s evolving into a horse you never would have known was ever a racehorse.   His ground manners have improved tremendously and he’s learning how to use his body better every day.   My stamina is fairly limited so I hacked him out to a hay field all by himself (!) and even over a cement bridge that echoes enough to spook many horses.   He was sort of wondering where his friends were but I am pretty proud of him doing all that solo (well without another equine, obviously I was there.)   Then we went up to the arena and did just a tiny bit of work.  He’s easier to get on the bit going to the left and clearly is learning from Becca about how to do that better.   To the right is harder but he’s a willing learner and just so chill.

Even without my stamina I’m happy to say I still get an endorphin high even from a pretty easy ride!   Perfect way to end the weekend and now I’m ready for sleep and tomorrow’s monthly staff meeting with the Alumni & Development team at Duke Law.

p.s. I’m going to have to find something funny to write about soon.  I’m sure something hilarious will happen at some point this week?