Category Archives: surgery

Port placed 3 days ago

Many thanks to my SIL’s best friend, Simone, for going with me to the hospital Thursday to get this darned port placed. (I feel like I have a plug in me but that’s ok, it’s just an odd feeling. The port will allow blood to be drawn and chemo injected without poking up my arm.) And to Hallie for hanging out with me there that evening, and to my Uncle for picking me up the next day. It all worked out well, and now I have two weeks for the port to heal before chemo.

I can’t imagine having gone from port surgery to chemo the next day (per the surgeon’s original plan), as I was so sore and in so much pain from the surgery that that just sounds like pure torture to me. I wouldn’t even have had a chance to recover from the general anesthetic – and how exactly does healing work anyways when chemo is killing off the fast-growing cells? Doesn’t healing take place through those cells?

Moving slow today, my Aunt Nancy is here taking care of me, but we’ve managed to make several meals, go for walks and keep up on the dishes, so life is good. I woke up achy and with a small fever but it seems to have broken with ibuprofen, so that’s great. (Don’t worry, I did call the doc he said actually to get out and breathe more, that fevers sometimes come up post general anesthetic if one doesn’t breathe deeply enough.) I felt so bad this morning though that I had to take it an hour at a time – you know how it is when you have a really bad day, and at some point you just say to yourself – thank goodness, tomorrow is a new day. A new slate, I’ll just start over. Well, I’ve done that with every hour of this day, just being in the moment and things have gotten better. A two-hour nap helped loads too. 🙂

On the agenda for this week and the next: a wig fitting, mind/body support group, physical therapy, meeting with my new primary care provider, an acupuncture appt for mastectomy scar pain, a 2nd opinion oncology appt, a gynecological oncology appt (just to be on the safe side), a bone density scan, and the pre-chemo shopping for biotene and the like. Still trying to figure out a nutritional plan for chemo that will protect my gut lining (mouth sores in chemo are really part of a whole GI tract set of problems brought on by killing off the fast-growing cells in the gut lining, as I understand it.) Still need to see a dentist, and get in with a pain mgmt doc. A list a mile long, but it’s finite, so it will all get done. Plus I plan to work as much as possible, as it’s such welcome distraction and I’ve been enjoying it SO much. It’s just a joy to do something normal.

Anyways, that’s the scoop – so far, so good, as surreal as it all may be.

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A little whine and a kick-a&% book

I just need to whine for a moment: Anniversaries of traumatic events are sneaky. I finally figured out why last Friday – Good Friday – was so rough for me. Last year Good Friday was really, really bad – it was the day my Aunt Maxine died.

So, in any case this would be a rocky time for me, and it is what it is but sheesh. These days are hard. I know I’ve been incredibly upbeat, however, I’m in pain, I’m grieving her loss still a bit, and then my own losses, I have hot flashes and CHILLS (how come no one told me about sudden-onset menopause and chills??? what the heck? I’m either stripping or putting on a big old parka and a blanket, no rhyme or reason to it) and then I have this meeting about chemo today, and again tomorrow and then a darn big decision to make and somehow it all seems too much. Not fair. I want to say enough already, but I do have this theory about the universe as the giant trickster who likes to “one-up” us, and so I don’t want to tempt fate by issuing any challenges.

Ok, officially DONE with my whining for the day!! Bring on that Chemo discussion. Survival stats – check, bring them on. Relapse stats – fine with me. We’ve beat them SO many times with my neice’s health, and with others that stats don’t scare me. Boo.

Many thanks to Sam from England for the “Coping with Chemo” book – it was right there on the shelf at my fingerprints this morning when I decided I really needed it.

And speaking of my bookshelf, I can’t wait to get to read the kick-a** “Cancer Vixen” book that arrived in the mail yesterday. It’s a comic book! Woohoo! LOL. Many thanks to my board member Minda! It’s certainly inline with my cousin’s comment of being able to kick this tumor’s a@$. 🙂

Cancer Vixen cover

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Stuffing Meltdown

The stuffing in my post-surgery camisole insert has reduced me to tears. Hallie and I tried and tried yesterday to get it right, to get it to match my left breast and we couldn’t do it, and finally concluded that we needed professional help.

So this morning I called the Transitions Appearance Center at Providence’s Ruth J. Spears Breast Center, and was all set to make a joke about being lopsided and lumpy, and just couldn’t do it. Instead I dissolved into an embarrassing puddle of post-mastectomy crying that would rival any 5-year old’s meltdown. The head of the center was very kind though, and patient enough to cajole me in between sobs to explain why the stuffing wasn’t working, and invited me out so she can get me properly stuffed. Lol. They’re not even officially open yet.

We all knew the tears were coming, I just didn’t think it’d be over something so silly, a little bit of cotton fluff.

My friend David made me dinner the other night and we went for a walk, and the stuffing hurt so I took it out. He said he was proud to walk with me, that I was a one-breasted warrior. And I liked that, a lot. It made me feel like a survivor and strong, and proud to have made a decision to save my life.

Guess this is a day to take it easy and chill out…I woke up in SO much pain this morning that I took 2 dilaudid. Lizzy’s on her way though, so we’ll do laundry and play sodoku and take it easy today. One hour at a time. And I’ll stay ahead on the pain meds.

And many thanks to Hallie for washing my hair yesterday, I love it being clean, but then I slept on it funny and somehow a bad hair day just undoes me. Maybe Lizzy and I will put it in curlers and that’ll make me feel better.

For Erin, if you’re reading this, the pink roses are so, so pretty, and the pin from breastcancer.org just lovely, their website has been such a source of support for me.
Thank you.

And Marta, your card arrived all the way from Italy, and I so love it.

As soon as I download the pictures from my camera to free up some room, I’ll start taking pictures of all the gifts and cards and flowers that have arrived, as I’m surrounded by loveliness.

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Waking and the Mack Truck of Remembering

I woke up this morning and I had forgotten. What a glorious moment that is, the moment before you remember that something world shifting has happened. I wondered why the heck it felt like a Mack truck had hit my chest and underarm. Turns out it had been 12 whole hours without painkillers – thats a loooong time! I am slowly trying to wean myself off of Dilaudid even now (1 week today post surgery!), but as a friend said last night, if there’s anytime in your life that you should get to take morphine, it’s now.

Then I remembered the tumor is gone, and apart from the chest pain I actually feel better than I have for a long time. Naps, lots of sleep, 3 healthy meals and 2 walks a day will do that for you. And no sugar and no alcohol. Plus all the company and support. And the down time. So far so good!

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The Tubes ‘n Stitches Are Out!

Woohoo! What a big day. And boy am I a much happier camper. The stitches were pulling and driving me crazy, and the drain tubes in my chest hurt. And major kudos go to my friend Lizzy for witnessing the whole sordid chest and stitch baring. She is braver than I, though I am beginning to come to terms with the incision where there used to be my cute breast. My cute boob is no more. All gone. Bye bye cuteness. 😦 But also sayonara oh icky tumor, and hello life!! That part makes me VERY happy indeed.

Anyhoo, bossy britches that she is (her words 🙂 ), Lizzy suggested that if I wasn’t so darn scared of the pain it wouldn’t hurt so much. So, yes, I’m going to work on that.

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Crisis Management, Step 1: A Stellar Medical Team

A shout out to my stellar medical strategy team, my informal and formal support on all things medical:

My sister-in-law, Anne, who is amazingly persistent and tenacious, and who loves me to bits, and whose sense of the broad-brush strokes of what’s important is absolutely on the mark. And to Anne’s family, for being there on call whenever we have a question, for your medical knowledge and networks and willingness to help, my deepest gratitude and love. And to my brother, for holding down the home front, and to my niece and nephew for giving up their mommy for longer than they wanted to.

My favorite college roomie, Kristin Rowe Finkbeiner, for her incredible sense of perspective and strategy, as well as the occasional dirty joke to keep my spirits up.

My rockstar of a cousin, Rosemary Detweiler, who just so happens to run a pathology lab, and whose down-to-earth common sense and knowledge has been invaluable.

My parents, who held my hand after surgery and told me I did the right thing.

My dad, for his guidance on the Jesuit discipline of discernment and decision making, and for the encouragement to stick to my guns for what I want, but to listen very carefully to what people are saying and even what they aren’t saying, and for teaching me the art of asking questions, as we know that the question that we wouldn’t know to ask is the one that gets us in the end. And also for rescheduling his own surgery and enduring yet more pain so that he could be there for me.

And to my mom, for being such a good mom and giving up her week to come take care of me in the midst of her own very busy career and home remodel, and for teaching me not to freak out over little medical glitches. And for lending me her friend Judy as a surrogate mom, and to Judy, for teaching me the calming art of Soduko puzzle solving. (Yikes!)

And of course to my doctors so far – the radiologist who first caught the tumor; my naturopath, Dr. Ripley, who was the first doctor I called and who pretty much told me how things were going to go down, and they in fact did – and my deepest thanks to her for getting me in with the surgeon I adored; Dr. Giswold who made the great call to have the MRI done, which was what really showed us what was going on; Dr. Mashru, the oncologist who ordered the PET and CT scans which provided the very reassuring information that the cancer is NOT systemic; to both of my oncologists, who called me personally, boy does it make a difference to have my docs call me, thank you; and to my surgeon, Dr. Carmen Hudson who took out the tumor and who has had my back at every turn, and to Dr. Judith Richmond of the Oregon Breast Center, a surgeon who just so happened to stop by my surgery to consult on my lymph nodes, and who stopped by in pre-op to tell me everything was going to be ok. Because it is.

And to all the medical staff who were super helpful, especially Kristin in Xray at Kaiser Sunnyside, who gathered films in record time allowing us to make a crucial 2nd opinion appointment, and to my hypnotherapist Suzanne Browne, who referred me to my surgeon, who I adore, a big thanks.

To Dr. Lake, the sweetest cardiologist in the world, who called me personally when I was really freaked out about what turned out to be a lab error, and who went the extra mile to do a cardio cat scan and an echo to prove without a doubt that I have a good heart, my unending gratitude. And to the cardio nurse, Denise, may all your days be blessed, for your incredible kindness and efficiency.

To all the lab staff that helped fast-track results which we desperately needed, you are good, good people.

To the phlebotemists who actually listen when I say I’m a hard stick, blessings on you. To the IV “tiny vein” man who had the wherewithall to sing “I’m so vain” (lol) but more importantly who actually used a wonderful invention called a lidocaine wheel to make the IV in my hand hurt less, my deepest thanks.

To the mean receptionist who was a total biaatch to me on the phone when I was sitting in a hospital bed 17 hours post mastectomy, may there be a dark place in the world for you. To the medical receptionist at Peace Health who demanded inane information from me when I was in urgent care and couldn’t breathe and therefore couldn’t talk, go to hell. And to the doc who relied on one errant blood sample to MISdiagnose congestive heart failure and scare the hell out of me when 90% of the other evidence was to the contrary – dude, go back to medical school.

To everyone who was helpful, my deepest thanks. To those of you who were obstacles in the path of my care, may I suggest switching jobs? To the oncology nurse who told us we were micromanaging my care, well, I complained to member services about you already. Entirely inappropriate thing to say to a patient. Just to reiterate – every patient has the right to ask questions about their care, to request relevant tests, and to have those tests and questions answered in a timely fashion. If the medical model today was that one doctor really was able to manage the entirety of a patient’s care, well that would be one thing, but the reality today is that patients manage their own care. So to those medical staff who help us do that, I am so, so grateful.

And for my personal medical team, I don’t know what I would do without you. It’s so much new information, and having help makes such an enormous difference I just can’t conceive of life without you.

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How it all started: March 13

This is what I posted to my friends:

holy crap, this news sucks…read sitting down


of course you’re sitting down if you’re at the computer, right ok, having a strange sense of humor at the moment….but this was one heck of a bad day.

at 3 pm this afternoon the radiologist called for her “brief” report.

Which was the bad news that I didn”t want to hear:

the big C…..not cholangitis (I wish) but cancer, breast cancer.

Sigh…..

She refused to read the pathology report over the phone to me, set up an appt with the surgeon for Friday, and told me I could get the path report then ; talked to Anne, we both agreed path report was the top priority.

So, and you all will be proud of me, by 9:30 pm I had the path report IN HAND. Woohoo!!

And then so not woohoo….

Results:
Invasive (bad).
Estrogen + (good).
Progesterone + (good).
Her2/neu “equivocal”, whatever that means…
….
Sigh again….. My cousin the pathologist says that with invasive the path is mastectomy and chemo but that that can be “a bump in the road of life.” Ok, right-o. Feeling slightly morbid at the moment, sorry.

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