Author: Sandra Good

Hi y’all! So for this DIEP flap surgery my recovery is looong. My mom is coming out for the first month to make sure I take my meds and don’t open up my abdominal incision doing something stupid. That we’d still be grateful for help with food and possibly other errands and things which have yet to occur to me.

So…here’s another signup genius form. Thank you in advance and apologies for my restrictive diet. It’s easier than I expected but a bit different than I used to eat!

If you can’t sign up send healing thoughts and good juju and prayers and all that. I’ll be inpatient for 3-4 nights then home.

Even though this is a major surgery I’m really excited it feel like there’s a light at the end of the tunnel. I’m sure at 2 weeks out I might feel a little different but remind me. 😜

Love y’all! 💕

https://m.signupgenius.com/#!/showSignUp/508094ea5ab2ca31-surgery

Hello. I’ve had such trouble writing a post with some medical updates as they’ve taken me a long time to process. I have my left breast reconstruction (it was a unilateral mastectomy) scheduled April 3 and I’m looking forward to getting that step on my path to heal up from triple negative breast cancer behind me.

This is a major surgery – DIEP flap surgery – because I was not able to keep any skin or breast tissue. It is my only option for reconstruction – and I’m grateful that I have a Duke microsurgeon who has a great success rate and seems to get my weird sense of humor. My PRE-OP appointment was last Monday and it was abundantly clear I’m going to need a lot of help post surgery. Much more than I did post-mastectomy. I am so grateful to have such a wonderful community of local friends and colleagues to call on for help! You’ll be hearing from me.

Soon I’ll post a signup genius again – not knowing exactly what I’ll need it will be a little more free form than last time. For at least 8 weeks I won’t be able to clean or do laundry, so there’s that. I am hiring some extra help around the house but there will likely be daily needs and I’m hoping someone will text or call me daily to check in and find out what I need assistance with…sometimes probably helping grocery shop/put away and other times maybe laundry. Or maybe just coming and hanging out and cracking jokes. I’m doing a lot of preplanning to get things I need access to at hip level as I have to be in a “beach chair” position standing or lying down for the first two weeks – to allow my stomach to heal since that’s where they’re taking skin & tissue for reconstruction.

I’ll also have a meal assistance sign up. This gets complicated as I have adopted a strict anti inflammatory diet – as I’ve recently been diagnosed with the autoimmune disease known as Rheumatoid Arthritis. Sigh. It’s been a bit of a shock and adjustment…so I haven’t shared widely yet…but if you spent much time with me since 2012 you likely know about my feet pain complaints. When I was first told I had RA, I didn’t think it sounded like a huge deal (given the daily/nightly pain I had learned to accept was just part of my life and I couldn’t run or hike or walk very far any more and had to ice my feet most nights to be able to fall asleep.)

I couldn’t understand why my oncologist was so serious/sad face when she said she was so sorry to hear of diagnosis. After reading a lot about RA, I get it. It sucks I stopped my chemo because I thought the chemo was causing hip pain, but, it wasn’t.

So…I’m on an elimination diet at least until I can explore treatment options with my rheumatologist. I have to recover from surgery before messing around with immune system suppression. Thus: No gluten no sugar no sweeteners no dairy no nightshades no alcohol. And I’m vegetarian. I do eat some fish for protein and omega 3s. Hahaha that’s so ridiculous to see written out. But I’m actually getting used to it. When I finally get back to work I know it’s going to be hard for my colleagues to recognize me without a Diet Coke in my hand, but I’m sure we’ll all adjust!

My feelings about RA are really mixed. It is nice to know why I have suffered from so much foot pain. And around the time it began a lot of colds which I chalked up to work travel. Fatigue and having a hard time getting going in the morning also explained.

On the optimist side, I am hopeful since my feet have remained constant in their painfulness with dorky shoes and icing that it hasn’t started eroding bones. I am sure they will be doing much more testing after I get through reconstruction. Luckily I’ve had heart tested for procedures for cancer so pretty sure my heart hasn’t had any damage from it. Apparently your risk of a heart attack goes up 68% when you are diagnosed with RA.

1.3 million Americans have RA…which I guess explains why going to at least 8 different docs about my bilateral foot pain, and others for elbow and hand nerve pain, no one referred me to a rheumatologist until I had hip pain I attributed to adjuvant chemo.

That’s the disappointing part. Everything I’ve read about RA emphasizes the importance of treatment as soon as it’s diagnosed. Yet I’ve been living with it for 7 years so I am not feeling like it is emergent. Except when I can’t chop vegetables or open a jar. I sometimes wonder if I had gone to a decent orthopedist first and had kept going to him (not gonna lie he was a total jerk and dismissive of my pain because it was bilateral – a telltale symptom of RA) maybe I would have been able to start RA treatment sooner.

Like a lot of pain from which women suffer in greater numbers, I have learned that RA is often midiagnosed or the pain is not taken seriously. And I see a role for AI in helping better diagnose chronic issues. When I went to the doc for elbow pain and hand numbness it didn’t occur to me to mention my feet and I don’t know if I did. Despite the fact that after diagnosis, I went thru my med records and was astonished how many times I’d gone to the doc for my feet. I had forgotten how hard I tried before I gave up and, until I started riding again, mostly quit exercising hard.

Moving forward riding, and water based exercise, will be a key component of me maintaining my mobility and strength as long as possible.

Sigh. Now that I’m done writing this I see why it was hard to start writing.

Thank you everyone for your positive thoughts and all the different kinds of support you’ve shared with me. The Gofundme has helped me manage being on a partial salary for many months (along with continued help from family members) and to pay for the $6,000+ in out of pocket medical expenses I incurred last year. I’m on my way to meeting or breaking that this year. And, yet, I remain hopeful and focused on enjoying each day. Today that means grateful I just got scraped skin cancer free, waiting at the vet for annual checkups for Sister and Scooter who are acting like goofballs, then I’m going to get my tax returns…checking things off before I’m out of commission for 12 weeks!

I’m still here. Not only have I been away for a while but my last post apparently didn’t post over a month ago.

I’m tired, which is not new. I am planning more treatments, trying to arrange second opinions about continued systemic treatments, and scheduling future surgeries. I just haven’t wanted to write about any of it. December was hard with the holidays (see last entry posted late – and my strategy failed!) and some anxiety waiting for the slew of medical appointments that began last week. I also decided that therapy is probably a good idea as I’m contemplating all the things. Last session nihilism, existentialism, stoicism and absurdism were topics…among many things…so while my body is very tired and my brain is very…I’m not even sure there is a word I know that could describe the fluctuations.

Anyway. I am taking disability leave from work to try to get my life a little more settled (maybe I will sleep like I used to again. Some day?) as I continue PT and other follow up appointments and prepare for a preventative hysterectomy on Feb. 5. My mom is coming to town to help out around that so that will be helpful. Me being me, I’m mostly worried about when I will be able to ride and do horse things again. The surgery is laproscopic so hopefully two weeks to basic normal functioning…although given the hormonal changes I might be a little extra. We shall see.

Tomorrow I meet with the plastic surgeon to figure out my reconstruction plan – it’s DIEP-flap surgery and google it if you want it is hard to explain and also kind of gross imho. Hopefully the first step of that surgical adventure will be later this year…mid-year maybe. The follow up surgeries should be minor.

I should also see a medical oncologist at UNC for a second opinion this week but she had a family emergency so I don’t know when that’ll happen. The longer I wait the more I wonder if I should just go with my gut and not take the chemo that gave me painful joint pain related side effects in November. I don’t know. I have decision fatigue over all of this.

So, here I am, for proof of life purposes.

Thanks to everyone for your support (omg the gofundme saved me while I was out without pay – thank you you know who y’all are!!!!!) and good vibes and prayers during a very strange and difficult time of my life. So much of life just keeps going and so much has changed. I miss work and seeing our west coast alumni out there. I’m grateful for riding and having Banner to focus on and get me outside. I look forward to being back to “normal” whatever that turns out to be.

I wish everyone who reads this a happy and healthy 2019. 💕

With the holiday season upon us I did some ruminating about the season and how I tend to feel during it. Often it is as though I am on the outside looking in as people post their decorations and holiday parties and various other holiday jingle jangling. Or like I’m missing the hooray it’s the holidays! button or microchip. It isn’t that I actively dislike the holidays, though I do actively resent the short days and feel better every December 22nd as the daylight begins to stay with us just a little longer. But the holidays are fine; but, for me, not that much different than all the other good or meh days I have throughout the year. Unless I get into some eggnog. Too rich. Then it’s a worse upset tummy why-did-I-do-that day.

At any rate, it occurred to me even tho it’s just another time of year for me – since it makes a lot of people happy I should celebrate that, because I love people and I wish for happiness and contentment for all the people of the world.

So my goal for this year is to embrace the joy of others during the holidays. I can experience joy because people around me do!

So you go, you lovers of the festivities of winter! Hanukkah, Christmas, Kwanzaa, and whatever else goes on in December – if you are inclined to celebrate, do it! Sing carols, put up sparkly lights, make piles of cookies, go to parties, and perhaps take some hours or money to help those in need during the holiday season.

Ooh! I just had a thought – maybe I will put up my sparkly lights on Dec. 21 until daylight savings time is here. I do love sparkly lights. Possibly too much effort required, but maybe!

Happy Holidays!!

Hanging in there. This week was strange but I got some relief when I got a call from the cancer pharmacist telling me to stop taking Xeloda until my symptoms get better. Then I’ll start on a lower dose.

I was texting with another triple negative breast cancer warrior who has gotten through the roughest years…she gives me inspiration…anyway I was texting about how sick of it all I am. Pun not intended. She said it was good insight and true. Here’s what I wrote:

I think I have cancer fatigue and friends have cancer-supporting fatigue and far away friends especially close ones have omfg we can’t do anything to help fatigue. 😂💕. And I think that’s totally normal for everyone!

That was the text and sort of where I am right now. It’s my least favorite time of year due to the darkness but I’m taking it one day at a time and the solstice and longer days are not far off.

Also, Christmas music! ❤️

Wow talking about striking contrasts…I was feeling so Zen yesterday. I was too Zen to write. I had a great week of working every day (not full days but every day and starting to feel useful again!) and even having a first time meeting with an alumnus for the first time since diagnosis in March. I didn’t want to get myself run down so worked 9-12 in the office, sometimes I ran over, and also here and there remotely in the afternoons.

I decided in my “spare time” to not try to do all the things, which tends to be my default. Probably most people are the same. Anyway, I very intentional about “doing less” to avoid getting run down. So I worked in the morning and allowed myself one other thing in the afternoons – an errand one day, cooked chili one day, and rode my horse a couple days. I did some bedtime yoga at night and managed to get really good rest and feel sort of back on a routine, which was so nice!! Then on Sunday I rode out in the hay fields, got a manicure, talked to my mom, got a therapeutic massage, and took an Epsom salt bath ahhhh! Seriously excellent day. Don’t I look happy and healthy?

Good thing because: then today happened. Okay so really, it wasn’t all that horrible. But it kinda sucked. I woke up earlier than I meant to thanks to daylight savings and then almost overslept my appointment with my medical oncologist. But I made it and my pal Melissa 💕 was patiently waiting for me when I arrived at the Cancer Institute. Got my vitals checked and then to a room. All was going fine and I was being all positive and such and then my medical oncologist came in and looked at my skin and said I was ready to start the next treatments – oral chemo and a hormone blocker. For some reason I thought I’d have a little more of a break but, I said okay tell me about that. For what will hopefully be “only” the next 24 weeks I’m taking 4 tablets 2x a day of this drug called Xeloda for two weeks on/then I have a week off. I knew about this and knew that some people get “hand and foot syndrome” from it but I hadn’t really researched it much because I have found, much like keeping up with the news these days, researching cancer causes me more anxiety than comfort or clarity in the way of solutions. Anyway, my doc made it sound like it’s a matter of when not if I get either the syndrome or one of the other more common side effects – at that point I need to hold on the chemo and we wait until my hands and feet (or mouth or gut) heal then restart at a lower dose.

Doesn’t that sound fun? I know. I’m gonna post pics of the other glorious side effects that may or may not have been part of me bursting into tears waiting at the DCI pharmacy for my drugs. Luckily, Melissa had left (I hate to cry in front of people!) and there’s a quiet room nearby where I went to breathe and chill while I waited.

So many side effects…hoping to avoid most!!

Also I start Tamoxifen which I understand I’m to take for TEN YEARS. I almost never use all caps but it seemed appropriate.

So there’s that.

I also had to get some bloodwork as I’ll be doing more regularly as I go to my oncologist at least every three weeks for the next 24.

In other news, dark chocolate Twix are really good. So is my vegetarian chili. Also my dogs decided to go take a nap together in Sister’s crate with the door open. So cute!!

Yesterday was day 5 of feeling more off than usual with headaches and body aches.   Today I think I feel better.   I know not to trust that my energy is going to be stable from day to day or even in the same day.   But I’m grateful to feel a bit better – like putting the sheets in the wash wasn’t something I had to drag myself to do.   Soon I am going to go ride Banner – we are in a little bit of a disagreement about cantering right now so I expect to take it easy and just walk/trot.   I need to be sure I’m back at full power before I try keeping him cantering through his playing bucking.   I know it’s not evil bucking but if I’m tired at all, which often I am, I can get thrown off balance and be forced down to a trot to get myself re-combobulated (I know that’s probably not a word but that’s how it feels) and thus am rewarding him my stopping what I was doing because of a little buck.  Or two.  But really, for those of you who don’t ride, it’s more of what I would call a “crowhop” and it’s really just a little extra boing.    Becca, who rides him quite a bit when I don’t, has not had a problem working him past it so it’s just something I will have to work through with him when I can.

In other news I was trying to count my supplements this morning.   One of the surprising sources of overwhelm during cancer treatment is being advised to take so.  Many.  Supplements.   L-Glutamine, Biotin, Astralagus, Ginger Root, some concoction of Chinese herbs from an acupuncturist (I gave up on those because 3x a day was too much), B6, B12, Vitamin D…I could go on and those are just in addition to the other things I used to take such as a multivitamin (I stopped but will restart I think) and Vitamin C.   Most of these are in caplet or capsule form but some are liquid or powders that need to be stirred into liquids.   I am what doctors would call “non-compliant” much of the time because I just forget what with having to hot compress my eyes to keep styes/chalazoids from forming and icing my feet (old injury maintenance) and massaging various lotions and potions onto my radiation injury.   Also, for the past two weeks, and currently, padding the scabby part with a vaseline-soaked gauze pad they gave me and then putting a thick “abdominal pad” on top of that and then putting over that a pair of women’s hospital issued undies with the crotch cut out, tube-top style.  Yep.  That is real.   The hospital folks are creative.

And that’s before I even brush and floss!!

I wouldn’t have described myself as high maintenance before cancer.   But, right now, yes I am and it’s often too much for me.

That last post didn’t capture my mood for most of the day. I guess I should write more because it makes me feel good and I forget how sweary I have been feeling all day. I will say one thing. It really sucks when you have a headache and think “oh I hope that’s not a brain tumor” and start to sort of lol to yourself but then realize that, now, that actually is something to be legitimately considered. I need to ask my doctors at what point do I worry about a headache that keeps coming and going. I mean I think it’s a cold/sinuses (I get allergies often this time of year) but I don’t know.

This is just one part of life after cancer. Especially a cancer that likes to metastasize to the brain. Or the pancreas. Good thing I don’t know what a pancreas-ache feels like!

Random pic of beautiful Banner!

It’s been a bit. I have completed radiation therapy. My skin is still processing it, I didn’t expect to have peeling and scabbing almost two weeks out, and hopefully it will recover soon. My optimism had me all like “oh yeah I should be back to 100% in a week” and my optimism was wrong. But I’m here and that’s good. Some days are better than others, I managed to pick up some sort of cold/malaise that resulted in much sleeping (for which I’m grateful since I was having a battle with insomnia the week before) and avoiding of people. It is ironic that being around people makes me feel better, generally, but then it’s cold season. I left the house today to go brush my horse, whom I haven’t had energy to ride since Tuesday, and pick up some groceries. Then I got home and realized I had to also put them away. I hate that. But now I have stuff to make vegetarian chili tomorrow, energy cooperating, so that is good.

I got a certificate when I finished radiation – one I didn’t get for chemo since I never finished and I also didn’t get for my mastectomy! Come on I feel like an I Survived Modified Radical Unilateral Mastectomy certificate seems appropriate? Okay maybe not. At any rate, my radiation oncology team was great but I wasn’t sad to say goodbye to daily trips to see them at the Duke Cancer Institute. Radiation appointments aren’t nearly the fun group activity that chemo was…it felt far more clinical to me despite a lovely team of therapists. I didn’t get to hang out and crack jokes, they’re on a schedule!

Anyway…a lot of well-meaning folks congratulating me on being close to the finish line…which would make sense if I had a lot of types of breast cancer. Lucky me, I have a “special” kind of breast cancer, triple negative. It’s not that unique but something like 20% of BCs, so a minority. I finally figured out the diagnosis is one of exclusion – basically it just means my cancer cells didn’t have the types of receptors that would allow for some of the new-fangled (okay not that new) targeted treatments work on them. So I got the full chemical, surgical, and nuclear treatment. Since chemotherapy did not kill all the cancer cells initially, the next step in this long treatment process, is 8 three week cycles of Xeloda. It’s an oral chemotherapy drug. So I won’t have to go to the hospital to get it. But no chemo hang-outs! On the bright side I should keep my hair and most patients don’t have too many side effects – most common is a sunburnt feeling/look on palms and the bottom of your feet. But I guess is that happens you stop the drug and they’ll adjust the dosage.

As things progress over the next couple of months, I’m hoping I regain my energy, as the worst part of radiation was the fatigue that accompanied it. So, fingers crossed for that. I’m not sure when I start Xeloda. Honestly, the whole treatment plan is so long, I’m not sure it really matters when it starts. Whenever they tell me!

As an added bonus, although my cancer was categorized as “triple negative”, it turns out that my cancers hormone receptors were slightly positive – so not positive enough to treat me with a more humane initial treatment but positive enough that they want to treat me for that too, long term, in the event it might prevent a recurrence. My notes from my last appointment with my medical oncologist mention aromatase inhibitors, ovary removal, and tamoxifen for ten years. I remember being shocked at the time frame of the latter but I don’t really know the overall plan. At some point prior to the ten years is up I should also have several reconstruction surgeries. I suspect that the ovary surgery, if required, would be before that.

So anyway. I want to get my life back to some semblance of normalcy. I took some time off from work during radiation, and spent most of my time going to appointments, resting, riding (my horse Banner was the key to me getting through radiation – bless him) and sleeping…and my plan is to ramp back up my hours at work. More slowly than I anticipated the day I finished radiation. I am still an optimist, and look forward to things getting better, but I am going to have to learn to adjust my pace and my expectations. I wish my body could tell me how long it needs, what sort of healing is going on behind the scenes, etc. but all I can do is pay attention as best I can and keep trying to take care of it as best I can.

Thanks to everyone who has provided me with love, prayers, a beautiful shawl, massage appointments, words of encouragement, and of course, laughs along the way. I could not get through this as well as I have but for my friends, colleagues (who are also friends!), and family. Family includes the animals – Scooter, Sister, Banner! ❤️🐶🐶🐴

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.