Tag Archives: chemotherapy

Ground Control to Major Tom – How ARE you?

Please forgive me dear readers for it has been one month and two weeks since my last update.

I admit I am almost running from all things that smack of 2012 – whether it be blogs, art bras, foods I found enjoyable … even clothes.

My problems are plain old every day problems now. It’s trying to figure out how to get the kids home from school every day with me working and an inconsistent, bandaided sitter approach to afternoons after our nanny quit.

It’s trying to figure out how to get a little extra sleep – past 6:30 – with three kids and two dogs who all arise at the crack of dawn and want to know on a given day what the weather will be, did we know it was the 1st of the month, would there be soccer, and what to do when their arm falls asleep. The last one happens in the middle of the night, too. As does visiting because they are cold, hungry, scared, or not feeling well.

We had strep and flu at the same time at the house. Our puppy apprently likes eating dog poop but last time she did it she threw up all over everything.

It’s good – normal. Vacuuming three times a week, washing clothes and hair often because of allergies, focusing on remodeling opportunities down the road, worrying about the impression I make at work. Planning trips between soccer and scouts and swim.

But then I am reminded that I’m not normal – and won’t be. I get a comment at my company retreat that I look so different – why am I growing my hair differently?

I have this super strange thing going on with my mouth where my tongue is inflamed and taste buds are enlarged and instead of just worrying about what kind of crazy thing I have going on – allergies? a virus? I have to set up an appointment to talk to my oncologist.

When I feel gas in my belly – is it the beans or is it cancer?

When I don’t get a good night of sleep and have to take a nap the next day I am reminded that my body is still only recovering from that “year and a half long battle” that you hear referenced in stories about other cancer fighters. I am that person.

I struggle with day to day being so mundane, so good, and yet so shadowed. I try to right myself by focusing on the accomplishments – a soccer win, kids scoring, perfect report cards, a win at work, a beautiful new master bedroom … and it helps most of the time.

But there are days when it all comes back – when the pain and fear of losing myself, my family, my battle … when all I want is just a break from this crazy thing that I now have that’s called life … and I yearn strangely for the days when I only had to worry about getting myself through the day as if that was enough. Now it seems like it’s never enough.

But, in general, when asked how I am, I am good. I am great. I am alive and healthy and happy. But don’t expect the same level of frenetic behavior as last year – I can’t make a bra and work and live and love. I can’t start a foundation and work and make dinner and clean up the dog poop. Some of you will – and can – and I totally love that you can.

I can’t any more. And that will have to be enough.

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Prognosis Good, Surgery Curative

Cameron, the 10 year old lab mix dog that saw me through trials and tribulations of cancer and treatment is apparently cancer free as well after open chest surgery last week.

We went in on Tuesday to meet with a surgeon – to talk about options. He was the best in town, we were told – referred by our vet and other doggie parents – and Davis and I took off from work to attend.

We stood there with an anxious dog while Dr. Kerpsack reread some of the materials we had and then laid it out – Cameron either had a cyst (benign) or thymoma (cancer) based on all the imaging and all the studies and all his experience. If it was cancer, surgery was necessary and soon – if it was a cyst, it could get big enough to cause him trouble later but it wasn’t urgent. But, if we wait, guess what? It could get too big to operate at all. And, oh by the way, because our vet had conveyed a sense of urgency, he had scheduled time to take care of it today. What did we think?

I am still reeling with the intensity of these last few weeks – the recurrence of cancer in our lives, the pain of not knowing what to do, and then the difficult decision to put our helpless sweet animal through what would end up being open chest surgery. Now, remarkably, he is up walking around – we have to keep him from jumping on the bed – he doesn’t know his own limits it seems, only I know mine more acutely now than ever.

I think I am going through some version of PTSD – not that it was combat in the traditional sense, but certainly trauma. And for the entirety of the journey I feel I was able to keep moving – to not allow myself the moments of doom or anxiety that could have enveloped me.

The irony is I feel it now.

I feel such a sense of commitment to Cameron’s recovery that each decision – should he be allowed outside? Should he be forced to sleep in the guest room? When do I give him his pain meds? How do we separate him from the puppy energy? Each step has taken on a gravitas that is seeping into my bones.

All those feelings of loss and pain and loneliness are here again – retrograde.

The irony is that he’s doing great. The surgeon claimed that the prognosis was good and they removed the mass which it turned out was thymoma. It was 6cm by 10 cm. They also removed a giant lipoma (fat mass) that had developed under his chin – 30cm by 30cm. Now he is the dog formerly known as frog dog. And I can tell he’s loving it.

I just feel a little buffeted this time around. I have no additional bandwidth to process all the newness. The new normal again and again and again. It’s one thing to get a strategy for sleep with a new puppy. Quite another to layer on the adult dog recovering who wants to go upstairs but can’t with doctor’s orders and how do you keep them separate and happy with one adult available during the day over a three day weekend?

My husband has borne the brunt of the sleep disruption because I have no capability – no reservoir of strength any more for sleep disruption. I am so very thankful. Where would I be if I were truly sleep deprived instead of just sleep altered?

I also have no capability for additional responsibilities. I am ridiculously thankful we have the puppy – who else could we cuddle and coddle while going through this emotional rollercoaster? And she’s amazing and cute and funny and potty trained.

I went back and reread the notes and cards that you all sent throughout my most focused battle – with each day it gets better – you’ll look back on this and realize that it really did suck – and that every victory is worth noting.

It was a good reminder of the path I have taken – and now that I can help my dog take it too as best I can.

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Anxiety is back – that old familiar feeling

Blogging is cathartic for me. So, I hope I get some of that good juju by taking a break today to put it all on the line. This one will be all over the place – because that’s where I am right now. But ohwell, another day in the life.

I have a ball of anxiety in my stomach curled up consuming me right now. I have always tended toward anxious – that is the type A personality after all, but occasionally, it comes back. It is like a ball of warmth that sits in my belly – reminding me every minute that I am not in control. Hi there ball I say – and it rustles and coils.

It seems to coincide with lack of sleep. And, here we have again, lack of sleep. (puppy – more on that in a minute)

It seems to coincide with multiple workstreams of powerlessness – a lack of a plan or control on a few different fronts.

So, here I am with multiple issues (none life threatening, none that are massive), but without a means to corrale my feelings, emotions, or plan a next step, I am paralyzed with my anxiety ball until I either get enough sleep, take enough meds, or come up with enough plans to make it all better.

After the initial euphoria that the dog’s cancer was operable, there are qualifications. The surgeons are suggesting multiple surgeries to remove it, multiple procedures that would be violently invasive – requiring drains and stitches and recuperation and recovery. He is fine right now, laying next to me on the bed. He even managed to play a bit with the puppy at her insistence this weekend. How can we put him through such pain and uncertainty when he has no visible distress right now? How much discomfort should we force on him just to have him with us another six months? I fight back tears even as I write this – how do you decide someone else’s well being? When they have no say … and yes, he’s a dog, but the echoes to my past two years (how can I expect him at 10 1/2 to recover what I am still reeling from in terms of invasive and corrective surgery? how can I not provide him the same support and therapy that he provided to me?)

I am having trouble with my hip – a consistent muscle ache that leaves me unable to sit or stand certain days. Is it the cancer back? I have appointments with physical therapists and masseuses and have started doing yoga and exercising – but what if that’s not enough?

And, the puppy. She is wonderful – sweet and loving and curious and soft and hilarious. But she is up in the night – how do we balance what we know is right (giving her access to the yard) with the needs of the family – SLEEP. I think we’re going to have to go against my humane judgement and crate her at night in the back room. Sanity and our health and happiness has to come first. I remind myself that some dogs live outside all the time. And then I start to second guess – was it too much to take on to make this addition now? Was I wrong?

Sleeplessness is a funny thing – it deprives you of your ability to compartmentalize, to fairly judge the severity of issues, and you forget how powerful an agent of destruction it can be.

OK, my anxiety ball is a little smaller now – I know it will grow the next time I think about end of life for Cameron and the decisions we must make, but I also must remember he is our dog and he is loved and happy right now.

I must remember that we are kind and loving den mates for our puppy – who is learning what she can do, and we are learning what we can do. As Davis mentioned to me last night – sometimes these last few months my desire is not met by my capability. I can not do the sleepless nights right now.

And, I think and hope and pray that this is just my muscles struggling to understand how to support and manage my new self, and not the cancer back. Enough is on the plate right now.

I heard a hilarious rant the other day from a lady who had lost her mother, her boyfriend, her apartment, and was diagnosed with cancer.

She said “Does God really give us only what we can handle? I picture him up there sometimes laughing – oh, she can take a little more. And the angels saying, God – what are you thinking?”

 

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And now the dog has cancer

I am overwhelmed. The frivolity and happiness of the new puppy muted by the terrific disappointment and anguish of the dreaded C word again reappearing in our lives.

Like before, out of the blue. Like before, no real symptoms. Like before, fear and pain and sad.

Our 10 1/2 year old first “fur baby” Cameron didn’t eat his kibble the last day we were gone. When we came home, he was less than enthusiastic. But it could have been that we brought along a 10-week-old puppy. I mean, we knew he wouldn’t be thrilled by that addition in general, but this was downright weird. He is totally and completely food motivated.

We saw him breathing shallow, and thought – maybe there’s something in his mouth, on his neck.

Imagine our shock and surprise when we found out that based on the Xray, he had a “mass” – likely cancer.

The frenzy, the questions started anew. Where do we go for another opinion and soon? Where do we go to get the best care? What can we do? Will he die?

I cried more than when I was diagnosed. Somehow this felt worse – I was powerless. I have been a red ugly raw all weekend.

We still don’t know – a trip to the Texas A&M emergency room netted us a a 10am slot on Monday morning for a CT scan and diagnostic follow up with specialists – the best in the country. He will have a CT guided biopsy (eerily familiar to those of us who have undergone the X ray guided biopsy – at least he will be asleep!) The earliest we could do here in Austin – surprisingly – was the 15th of January.

It has been the longest and shortest two days in the last year. Going from ebullience at puppy cuteness – she chases her tail! she walks sideways! she has a white spot on her chest! To the recognition that our other dear dog, my therapy dog, might instead be lost this week.

We told the kids, this time avoiding the term cancer bugs – Davis was concerned that it would echo too much on their minds to my battle (cancer = death??) We told them there was a mass that wasn’t supposed to be there and there might be drugs to get it better. Dad and Cameron will go to the best doctors in the country on early Monday morning for the tests that will allow the doctors to see his body better. But, there might be a chance Cameron doesn’t come back. There might be a chance that he would die.

Henry said “Well, Mom, you’ve been through lots of surgeries and have been fine – I’m sure Cameron will be fine.” I am sure of it too, because this time around, like last time, the other option is unthinkable.

You may think me sappy or sentimental for being so attached to our dog, but I point you to my last two years and the net that was my constant support – Cameron amongst. And, now I am granted the glimpse into the world of those around the cancer patient – the frustration, the grief, the overwhelming sad. I feel what so many felt for me.

I guess the good news is that Cameron doesn’t know the fight he faces. But the rest of us do, and we see the end in sight. Much closer than we expected. As is always the case.

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Why NOT a puppy?

There are times when I find my journey has changed my outlook. Holidays are certainly one of those times. I was always a Christmas girl – my grandmother was literally Mrs. Claus on her stocking and it rubbed off. Last year, this year, more special – cramming as much fun and frolic into the season. The elf, bon bon parties, extra big live trees, etc. This year, a puppy.

Yes, a puppy.

Just about everyone thinks I’m crazy. I have been working on Davis for over three months, but I desperately want a puppy and we are getting her on December 26th.

I was thinking today about why.

Cameron is a great dog – my therapy dog and companion in all of this and in all of our last ten years. He is such a good dog with the NOTABLE exception of the counter surfing – only one place in the entire kitchen is safe – a three foot square plot of land at the back of the range. But he’s getting old. I want to spare my family the pain of losing a dog and having a void. I want our new dog to enjoy his company, to teach him, and for him to have a burst of puppy energy.

But I’m sure there’s some Freudian reason for my desire – a cathartic rebirth, seeing my mortality reflected in the eyes of my dog, an existential crisis.

For me, it’s the pursuit of happiness. What’s a few hours of sleep missing, a few chewed fingers, an extra mouth to feed, when you consider the joy and love that will come. Of course I say that now before we are inundated with housebreaking and a pouting septuagenarian.

This week, this holiday, may your gifts be merry and bright, and may you be 10% as excited as my kids are about the presents that await them. And 1% as excited as me.

 

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The More Things Change

An exhilarating and exhausting October is behind me – the first since recovery, and therefore the first fundraiser (and success!) the first big speaking opportunity, the first month of remembrance for fallen sisters, the first real Halloween in a long time

I had my first girl’s night out with soccer Moms, drank too much at Halloween – sorry if I was a little bit loud fellow trick or treaters!), listened to my 8 year old son read an entire page of Chinese characters.

I am almost numb with gratitude. I realize that I was so lucky to have found it when I did. To have the support I do, To have my children the age they are. To have my husband. My family. Money.

There are days where cancer doesn’t even enter into my thoughts for hours. Where I live as though it was time before. But then I have a hurt back and I wonder – is that bone pain or muscle pain? Or I get a comment about Dubai – weren’t you going there? from a Duke interviewee. Or I look in the mirror and realize my bangs are longer than my hair used to be.

There are always shadows and some people it would forever alter in a bad way.

For me, I am altered and I haven’t sorted good and bad yet.

I went to a Pink Ribbon Cowgirls luncheon last week and it was hard – to go back to that raw place where even sneezing the wrong way can get you sick. It was humbling because my patient navigator addressed the fact that so many people had recurrences in October: statistically there is a massively higher rate of recurrence in the first 3-5 years after NED (no evidence of disease). We still don’t know why.

There’s a danger to being almost smug when you hear each individual story – one woman had it come back with a vengeance after a lumpectomy (I’m so smart I had a mastectomy on both sides I would crow!)one person had ovarian cancer come back and I think I’m so glad I had gene testing so I knew whether to do that or not.

It’s both a sense of empathy and a sense of relief. Profound relief.

At the end of the day – more than relief. Joy. Happy healthy kids. Happy healthy me. Biggest (real) worry is getting everyone to school on time, doing the best I can at my amazing job, helping my friends when they need me.

Biggest perceived worry, though … that will forever be different after cancer.

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Telling the kids

Many of you have been with me throughout this crazy journey, but for those of you late to the party, I told my kids about cancer the day my husband got home from Dubai. Which means Two days after my diagnosis, two days after our world got rocked, 4 months after we had decided to go to Dubai and one day after I realized I wasn’t necessarily going to die but it was going to be a helluva year.

I was asked to blog about it by a survivor here in the Central Texas area – here is her FB page: https://www.facebook.com/VictoriousValBreastCancerCrusaders

She is posting it tonight and I promised some cross promotion so here it is. Check it out. More later.

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I Don’t Know How She Does It

There have been a lot of comments about the similarities between the main character in the book and movie about the working Mom who does it all … and I have to admit I have been doing a lot. Between the hot pink hair dye party, speaking at a Komen event, hosting a party for 21 kids, making sure to please my children on their 6th birthday and prepping for Halloween, it’s been a busy two weeks.

But that’s not why I haven’t written.

I am scared to face a reality. My breast cancer could come back at any time. In any place.

Why on earth would I be worried about this in the middle of all this fun chaos? The lovely woman, Courtney, who wore my art bra last year (Hooter for those of you keeping track) to the event … who just got married … who is 33 and exercises like crazy and eats paleo and everything … found out her cancer is back last week.

And, for those of you who don’t know, when you have a bilateral mastectomy, breast cancer can come back – that’s why they don’t use the term remission – because it never really is ever totally gone. At five years they start breathing a sigh of relief – Courtney was a year 2.

And, when it comes back, it comes back in another part of your body – because, yes, you have no more breast tissue really so instead it comes back in your bones and liver and brain. Courtney now has breast cancer tumors in her liver.

And, when breast cancer comes back in another part of your body – because where else could it at this point, right? – it’s Stage 4. relative survival rate of 20% for 5-years. In and out of chemo, just trying to hold it off as long as possible.

Everyone thinks I’m brave, and yes, I had courage to fight something every day but I knew that it would work.

I am in pain right now – physically and emotionally for Courtney. I am scared for myself and my other survivor friends. I know I can’t dwell on it every day, but it is there in the shadows, and with Courtney’s diagnosis, I find myself thinking about it at least 5 times every day. at least.

When my mind wanders, it’s there. SO I don’t let my mind wander, I make pirate themed art bras for Davis to wear in front of total strangers. I host the soccer team end of year party with two hours notice, I pitch in to help with the Doss Chinese Immersion Advisory Council.

Even tomorrow, when I will fly to California to celebrate my Mom’s 70th birthday, I download three movies and two books because if there’s too much quiet time, I will slowly go mad. Or sad.

This last day of Pinktober, and Halloween, I don’t mean to scare you. I just mean to share – there are bigger things to fight. There are real things to be scared of, and there are also real heroes.

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To my kids – read when you are 18

Maybe you should wait to read this until you are a parent which hopefully won’t be at 18. Not that I’m prejuding your choices (yay if I’m a grandma already I guess!), I totally support you! But parenting is hard and I hope you don’t have to handle its delicate balance until you are at least 30.

So here it is – your Dad and I have perpetuated many untruths on you. You are 5 and 7 and so I somehow justify it by thinking it’s above your paygrade, and I hope that doesn’t scar you for life.

I’ll go with the low hanging fruit: Christmas. There is no Santa Claus. That was us. Filling up your stockings, wrapping the presents that you whispered into the stranger’s ear at Barton Creek after being coached. No magic reindeer either. So that food we put out? Swept away by Dad.

While we’re on the magic subject – the Elf that showed up at our house last year that you named Little Red? The idea was created by a brillant marketer. His mischievous acts? Dad and I after you go to bed. We found ideas on pinterest and in an effort to one up each other, parents all over the country participate in this ritual that some nights was relatively stressful since we had to pretend Santa Claus was coming and hide all the presents we would wrap each night. They are hidden in the guest room closet if you were wondering. Every year.

Dispelling myths? That means no Easter Bunny and no Tooth Fairy. Both us, too. We sat up until 10pm filling up a hundred eggs for you this year so that you could all have the same amount and fill up your baskets. The tooth fairy is a figment of someone’s imagination in the 50s to celebrate your move into big kiddo realm. Of course, we weren’t expecting sister to lose 5 teeth in two weeks and we had to make a special trip to the bank for the $1 coins. Ironically, you seem not to notice anything other than the “cash money” $1 bill. Did you know that each time the Tooth Fairy comes your Dad and I go through all of our foreign coins we accumulated on our travels to find two interesting ones for you? Maybe soem day you will care about that.

Um, and babies don’t always come out of bellies like you did, but you probably know that by now. Which means there is no deer doctor that runs around performing C sections.

And the part of the Daddy and part of the Mommy that get together? I’m still not prepared to answer how.

There were also some major tragedies this last year that we didn’t share. But you are kids, you don’t need to know those details. For you, things are safe and happy and it’s summer. SO, if you ask we say some people got hurt, some people maybe died, and the perpetrators made “bad decisions.” Even our tension with North Korea was answered that way … Henry, no more reading the front page of the Wall Street Journal.

So those are some of the big ones. I will admit that most of those were to keep up with the times – and to perpetuate our joy at your joy. We love the look on your faces when the magic happens. I wish we could keep that forever.

Now, the last year there have been some half truths as well – I didn’t, couldn’t tell you all about the cancer battle. Cancer bugs as well call them? Incredibly malignant cells that can proliferate all over your body. It was serious although I will be fine now. Although thechance will always be there that it will come back. I have done everything possible – the chemo medicine, the laserlight (radiation) and my surgery to get out the cancer bugs. But breast cancer does not have a remission it just has a “gone for now.”

I’m sorry we didn’t get to go to Dubai, and that I had a year where I lost my hair, was tired, and couldn’t play with you the way I wanted. I’m sorry that we glossed over the surgeries, but there was no way that I could tell you that I had drains coming out of my body, or that my breasts were gone. And now, as I enter into my last major surgery, I have told you that they are fixing some muscles. They are actually giving me my very own new set of boobs.

And I don’t have nipples so I kinda look like the barbies you played with yesterday in the pool.

I’m not ashamed of the half truths because they keep me going. I like to pretend that this is all no big deal too.

And, after you go to bed, your Dad and I watch super fun TV shows without you … and sometimes we go see movies and even go out with our friends and drink alcohol and eat breakfast tacos at 1 in the morning. But you can’t do that until you’re 21. Sorry.

.emmynoteeth

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Friday Night Milestones

This has been a week of proving to myself – and to others around me – that I am back in some small measure. I planned a fantastic surprise birthday party for my amazing, busy, now 40-year old husband … and it was like old times. Except for the fact that everyone commented on my hair and how long it was (bangs) AND that I had to take a nap the day before because of all my excitement and I was up until midnight because I didn’t get my sleeping meds on board until late AND I got totally sunburned on my neck sunburned in the 30 minutes I was outside setting up.

But more than all that, it was a milestone for me to be normal again … and so on a Friday night when normal people are enjoying their date nights or big plans, I update my blog in front of America’s Home Funniest Videos as Emmy calls it. Eating leftover pizza and drinking leftover beer. And loving it.

The medical milestones are equally important – I have my last surgery next Thursday and we are all relatively unfazed. Anesthesia? Replacing my expanders with implants? Whatever. Did I get the kids lunches made?

Side note – not a good idea to do a belly flop when you have had recent chest surgery. I speak from experience. Don’t tell my doctor but it was woefully uncomfortable and I didn’t catch any of the minnows and I laughed until I cried.

We also had our first family dance recital – where I was told in no uncertain terms that I did not appropriately put makeup on my daughter who is 5. I put on too little. I went with the daytime look and needed NIGHTTIME.

Everyone wants to know how I am. I am better, I am altered, next week I will be out at the end of the week, but I am totally happy. I will admit that I look forward to conversations about my next job … being a full time Mom and running errands with three yahoos in tow or trying to have a moment’s sanity is a skill I may sadly lack.

And, as to my project with Duke? I am working with the Alumni Affairs office to establish the Blue Devils vs. Cancer organization as an umbrella organization. They have asked to launch Duke Today Alumni website using my story … and I am talking with the Duke Cancer Institute to develop individual fundraising websites.

What once was routine is now a pleasure – juggling the many lives of mommyhood, survivorhood, wifehood – (party planner, tooth fairy, backstage Mom, cheerleader, reading expert and coach – all in the last week)

I hope to be better about

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