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September
2
2018

A Bee Flies in Brooklyn - September 2nd, 2018

Hi, everyone. It's been a while.  

Exactly a year ago I was in a pretty scary place. It was the limbo between the radiologist's telling me to bite the bullet and I face that I had cancer and getting my official diagnosis on September 11th.  Looking back it was the worst time of the last 12 months. Thank you all for helping me through it.

I wanted to do something to "reclaim my time", or at least my forearm.  It's been hard to look down at my hands and arms and not remember all the blood draws, injections and infusions.  But without them I may not be here.  Jackie's damn chemo saved my life so I needed to honor it. I had the idea that I should get a henna design that would move and swirl up the outside of my arm the way the drugs did on the inside.

I've been following a Brooklyn henna artist on Instagram for a while, not thinking I was in the market for getting work done; I just like to watch videos of her working.  As soon as I came up with the idea of the cancerversary chemo design I messaged her to see if she was seeing clients. I had no idea of how I was going to pay for it, just figured I'd ask for the hell of it.  Turns out that she was about to start grad school classes and couldn't see any clients. However, she said she was going to be doing henna designs in a park near me in Brooklyn for small donations for the Leukemia and Lymphoma Society.  I explained why I was getting the design and she told me that she was in school to be a physician assistant. The whole thing was perfect and we were both excited.

The day was beautiful and we sat at a picnic table while she did her artistry.  She completely understood what I wanted and just naturally created the exact design I imagined... even the little dots to represent cells. It was a special experience.

We weren't alone.  There was a bee who LOVED the henna paste since it smelled of henna, lavender, lemon and sugar.  The bee wouldn't leave - I walked out of the park, got on a bus, then another bus... bee was still buzzing around me.  I ditched it when I passed some rose bushes a block from my house.

What a year it's been. Again, thank you all for helping me keep it together.  I know I was a basket case sometimes.

Next week starts a new round of check ups with my doctors in radiology, oncology, cardiology, and surgery departments. I'm sure all will be okay - I'll let you know.

I can't wait to show off my henna!

Love, Marianne

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June
15
2018

Friday, June 15th - Happy Birthday, Richard

HEADLINE: Saw Jackie for my Four Month Follow-Up
SUBHED: Like It of Lump It

Hello, all.  It's been a while. I realize I didn't post anything during radiation. You didn't miss much. All I would have said every single damn day was "Ow! It hurts!"  Not the radiation itself but the pressure of the table edge on my ribs that had issues after surgery. Radiation ended a month ago so no more daily torture praise be to God.

I had my routine appointment with everybody's favorite oncologist, Jackie, today.  Around the time radiation ended I started to develop a lump where the LUMP used to be. It kept getting larger, denser, and more tender - it's like the size of a mango now. I knew it wasn't unusual to have fluid accumulate in the void left after a lumpectomy but something seemed off to me.  I've been trying not to be too nervous about it until I had my appt with Jackie. Well, she was concerned by this thing she called "massive" and sent me down to get it checked out ASAP. Great. Luckily Maxine the Radiologist could see me right away and did an ultrasound and put any fears to rest. It's in no way pre-cancerous or suspicious. It's not the fluid thing I suspected (seroma) but a combo deal of dead tissue that was killed by radiation and some fluid.  Back down to Jackie (yes, I was riding the elevators in a robe.... I gave up my modesty in that place a while ago) to find out how the hell they were going to get it out.  Well, they can't.  The stuff in there is too mixed and funky to aspirate with a needle and my newly radiated skin won't tolerate it being cut out surgically. So, it's "Me and My Mango"** for now. I go back to see Jackie and Maxine in 3 months to have it checked again.

Most of you know by now that I was officially let go by Condé Nast on Monday. Sucks. I've filed for Unemployment and have to scramble for some form of affordable health insurance that MSK accepts.  I doubt I'll be able to afford the plan I had through my old job.  Kyle and Duke have been superstars helping me get my LinkedIn profile and resume materials up to snuff.  So far I've applied for about 15 jobs. Hopefully someone soon will want an over-50, half-bald, snarky bitch to round out their team.

I only had enough money saved to budget out from October when chemo started until mid-April when I expected to be back at work. That money's gone now, like in an emergency kinda way, so I had to swallow my pride and start a GoFundMe campaign for myself.  People have been incredibly kind and generous and I'm completely humbled by and grateful for their kindness. If you haven't already seen it here is the link: Marianne's GoFundMe page

Okay, that's it for now.  Happy Father's Day to my brothers.  The proof of what good fathers you all are is how fantastic your kids are.  You've all done great jobs in raising the next generation of Butlers.  Daddy and Grandpa would be prouder all the time.

Love,
Marianne

                                      ** For the kids this is a song reference (see vid below), not poor grammar.
March
13
2018

Tuesday, March 13 - My New Birthday

HEADLINE: It's Gone! All Gone!
SUBHEAD:  Jackie Rules

I GOT A pCR!!!

Had my follow-up appointment with the breast surgeon Dr. Van Zee this afternoon. She came in smiling, quickly looked at my scars, and told me to put on my robe. She said she was bursting to tell me the good news: there was no evidence of any cancer cells in the "lump" she removed last week. It's called a pCR, pathological complete response.  The chemo had killed everything before she even went in.  She wanted to make sure I understood how rare this was and sort of amazing given how large my tumor was.  Even the lymph nodes that were tested not only showed no cancer cells, but that they most likely never contained cancer cells - not a matter of chemo killing them.  Ergo, it's not likely that cancer spread from my breast.

I asked her what my next step would be and she said, "go out for champagne with Dr. Bromberg."

I've decided that I'm not going to get the reconstructive surgery I was planning on. I don't think the lumpectomy will be too disfiguring and I just want to get on with radiation. It was only for cosmetic reasons and that I'd read a lot about a radiation plan being easier if there was less body to penetrate. Dr. Van Zee said my radiology oncologist was the best at Memorial and that she can figure out how to effectively radiate any kind of body.  I was sold. No more surgery for me.

I kinda feel like today is my new birthday. Maybe I'm a Pisces now and not a Scorpio. 

Thank you to everyone who prayed for me, hung out with me at the hospital, kept me company while I wallowed on my couch, or kept your fingers crossed.  It all worked!  Good job, people.

March
9
2018

Friday, March 9

HEADLINE: Lumpectomy Over. Lymph Nodes Cancer Free.
SUBHEAD:  MSK has really cute little cars that drive you between buildings

I've spoken with some of you, but not all. Good news: The cancer didn't spread from the tumor to the lymph nodes - or at least if it did chemo got it. That's a nice predictor of whether or not the cancer spread throughout my body. If it had the lymph nodes would have been its first stop, but no cancer was hanging out there.  

The surgery experience itself was pretty easy.  My friend here in Brooklyn, Nancy, was a hero and picked me up before 6am to drive us to MSK. The first stop was the Nuclear Medicine dept on 67th Street. I had to get an injection of nuclear dye to map my lymphatic system. After that was done a nurse led Nancy and me through the labyrinth of the main hospital to street exit on the opposite side of the building.  There was an adorable little mini-SUV waiting outside to drive us down to 61st Street to the building where the surgery would be.

The out-patient surgery center is only two years old and very nice.  It's named the "Josie Robertson Surgery Center" but people at Memorial all refer to it as "Josie".  Immediately I go to "Josie and the Pussycats" cartoon and am at ease. It's cute, not scary.  The check-in area looks like the lobby of a W Hotel, very comfy with good views of the Roosevelt Island Tram.  Nancy and I got electronic trackers to wear so that the staff could locate us at all times in case it was necessary. That was cool, too.

As usual the nurses and other staff were so incredibly helpful and friendly. They really make you feel comfortable.  By the time I got to the surgery room I was completely at ease.  Again it was a nice scene of "Girl Power" - every face I saw when I walked in was female. Good on you, MSK.  The last thing I remember as I drifted off was the anesthesiologist and surgeon gently soothing my arm and shoulder.  When I woke up I was in recovery.

Someone told me that my nodes were clear. Whoever that was, I love them.  I was told I had a huge smile at that news... don't really remember.  After a while Nancy came up, I had some water, downed some painkillers and eventually was able to get dressed to leave. When I looked at my face in the mirror on my way out I was a little freaked. I looked positively grey. Turns out I was actually bluish - the dye they used to map the lymphatic system tints your skin for a while. They could have warned me...

Lori was nice enough to come over after work that evening and spent the night.  Lucky for both of us there were no medical emergencies - I was fine if not comfortable.  This whole week I've been sore, but better each day.  I have exercises I have to do loosen up and stretch the scarred areas.  Sometimes they suck, but I'm doing them.

On Tuesday I will meet with the surgeon and get the pathology results from the mass she removed. I'm too scared to hope that it's cancer-free, but that's the ideal result.  They call that a "pathological complete response" (pCR.)  With triple negative breast cancer, that's what you want. A pCR gives you a significant advantage when it comes to recurrence and longevity.  

I've been reconsidering having the reconstructive surgery right away.  I have to speak with the radiologist and surgeons more.  There's a chance that radiation will be more effective if the tissue isn't disturbed by plastic surgery first.  The cancer surgeon left markers where the tumor was and that's the area that the radiologist wants to especially zap. I may not want the plastic surgeon go in there and rearrange the tissue.  Problem is that getting the plastic surgery after radiation isn't that good of an idea (many more of complications possible.)  Too many decisions...

I'll leave you on a cool note.  In my bedroom I have grandpa's old wooden wall clock that daddy would always wind.  It doesn't work, in fact the pendulum isn't even connected. It hasn't ticked or chimed in years.  However, a couple of weeks ago, out of the blue, it made one clear, beautiful gong. I'm taking it as a sign that daddy and Grandpa are watching out for me and wanted me to know it :-)

Love,
Marianne

February
25
2018

Saturday, February 24

HEADLINE: Surgery Dates Set!
SUBHEAD:  I Can't Believe I Have To Get Tattooed!

Lots of good news to share.  I'll just take it chronologically.

Tuesday of last week I finally met my new oncology surgeon and her team. She sat with me and showed me the previous week's scans and discussed them. Pretty good news from the new MRI and mammogram. The report said the suspicious area has "markedly diminished in density and size; no longer abuts the pectoral muscle."  Of course I was hoping it would 100% disappear, but this is still a good result from chemo. The tumor as a solid mass is gone, but the area where it was still shows up slightly in the imaging. It's as if something that was a big, solid rock has been transformed into a smaller dollop of foam. It proves that the chemo probably killed almost all the cancer cells that might have been circulating around my body. The area still has to come out in a lumpectomy, but it's fantastic that the muscle isn't involved. 

Really liked the new surgeon, Dr. Van Zee. It was a COMPLETELY different experience than with the one I left behind.  She was super detailed and went through my case with me from the first time I noticed the lump back in August. Her RN is almost as cool as Jackie's.  I feel completely confident in their hands.  Plus the other doctors in the hospital jump when she requests they see me sooner or send records over, etc. They seem a little afraid of her, which I like as well.

I've seen the cardiologist a couple of times and had a lot of heart tests.  He's prescribed a beta-blocker to bring my heart rate down.  Turns out that chemo weakened my heart muscle and it isn't pumping as efficiently as it was before.  That damage is probably permanent but not life threatening.  I can help it by getting my heart rate into the normal range through medication and then losing weight and exercising which I hope to deal with once I put this cancer to bed.  The beta-blockers are already working and my heart rate has come down so the cardiologist cleared me for surgery.

Speaking of surgery, the first one is scheduled at last.  I'll be having the lumpectomy on March 5th.  It's an out-patient surgery, in and out the same day.  It will take about a week to get the pathology results of from the removed lump.  If all is well with it I'll have the follow up plastic surgery on March 19th. The recovery from the lumpectomy portion shouldn't be so bad - the plastic surgery is actually a bigger procedure.  I think in total I'll be out of work about 6 weeks in total.

I also met the oncology radiologist team.  Radiation is something I'm really not looking forward to but it has to be done.  I was hoping that the little tattoo dots they put on you to keep the beams consistent weren't permanent, but they are.  That's disappointing - I like being tattoo free.

That's about it for now.  Wish me luck on the 5th!

Love,
Marianne

February
13
2018

Monday, February 12 - Mission Chemo Accomplished!

HEADLINE: No More Chemo Infusions for This Lady
SUBHED: Good, 'Cause Last Two Were Awful

No more poison infusions!  Done and done.  Chris came in from the Hamtons to accompany me to my last one on Friday.  It's soooo very good to have them behind me.  The last two had especially rough recovery periods. My amazing upstairs neighbor Zoë, Lori, and Sarah were true Florence Nightingales the past two weeks as I was a mess with emotions and crazy GI distress.

Tomorrow I have the post-chemo mammogram and MRI so the surgeon can get imaging of just how much the tumor shrank and (hopefully) peeled away from the chest muscle. I admit I'm very nervous. Please everyone say a prayer or send good vibes or envision rainbows over East 66th Street - whatever's in your comfort zone. Jeffie already did her part. I came home from my last chemo on Friday to find a package with a pair of amazing bright red lipsticks.  Thank you! I'll be wearing one of them tomorrow.

I have an appointment with a cardiologist up at MSKCC on Thursday since there's a little weird stuff going on with my elevated heart rate and high platelet levels.  Jackie promised me that the platelet problem doesn't mean cancer cells are running amok in my bone marrow. If that were the case the levels would be dropping instead of rising.  Still, my blood and pulse are wonky and need to be checked out. I am kind of hoping these problems are just because I'm fat and don't exercise but Jackie isn't convinced of that.  I'll keep you posted.

The one appointment I'm really looking forward to is on Saturday morning. I'm getting a complimentary false eyelash lesson.  While I was still upright this weekend I went with Sarah to a brow and lash salon.  The woman working on her was really nice and felt my pain at being useless at putting on false eyelashes. She offered to teach me how to do it.  I'll post a pic.

Happy Valentine's Day, everyone!
Love,
Marianne


February
3
2018

Saturday, February 3

HEADLINE: Only One More Chemo To Go!
SUBHED: False Eyelashes Trickier Than I Thought

In a strange way it feels like yesterday that Chris, Robert and I went into that chemo suite at Memorial and Diana pumped me full of those scary red syringes.  Four months later and I'm down to just one more infusion. Phase One of my cure is almost done!

Earlier this week I saw the oncology dermatologist again. He's optimistic my toenails aren't going to fall out. That's good news I guess.  So gross.  He told me to use OTC Rogaine on my head. I got a Rx for Latisse for my eyebrows and lashes. He asked if I had assembled the new surgery and radiation team yet. When I told him who they were He said, "Wow, you got the best."  Even if he says that to everyone about any doctors it made me feel good.

My brows are almost all gone but I'm pretty good at using makeup to fill them in. I've been trying to master the false eyelashes before I go out in public with them. I'm really spazzy with getting them on right. My clumsy neuropathy fingers aren't helping with such delicate work. I just look like a crazy person.

I started acupuncture to help with the neuropathy and hot flashes. It's through Memorial and they've done a number of trials that proved acupuncture helped a lot of patients with those specific side effects. I need to go once a week or 6 weeks.  If it doesn't help by then, it just won't.  It's convenient since the acupuncturist is right in the different treatment centers so I can schedule it right before or after other appointments.

Met the plastic surgeon earlier this week, too.  I liked him a lot.  He was confident that my plan of lumpectomy + reduction on both sides would be successful.  It will be up to the breast surgeon if they do it on the same day or if the reduction has to wait until pathology results of removed tissue comes back.  I went through a lot of photos of his work and the results looked less Frankenstein-ish than I feared.  Whatever, as long as they cut the cancer out and leave me looking somewhat human.

I went back to work full time last week.  It had its ups and downs.  Lots of hugs and a few tears from co-workers which was nice, especially from the uber-boss, Raul.  A couple of people were strangely nasty about my absence, but hopefully that will calm down.  I just want a paycheck every week again and for people not to be insane.  Maybe it's possible.

Okay, I'm off to put the Rogaine foam on.  Maybe we should look into buying in bulk for all my male relatives!

Love, Marianne

January
20
2018

Saturday, January 20th - HAPPY BIRTHDAY, MOMMY!

HEADLINE: Can Count Down the Remaining Chemo Days on Fingers and Toes
SUBHEAD:  Said Fingers and Toes are Really Messed Up!

Some of you have heard, but I don't think I've posted it here.  Memorial approved my request for a surgeon change. I'm going to be seeing the woman I wanted, Dr. Kimberly Van Zee.  I haven't met her yet but I've read a lot of very good things about her on my breast cancer forums and on medical review sites.  She's a well-respected researcher, good surgeon, very communicative with patients and has a reputation for having a very warm bedside manner - a real hand-holder. So far all my conversations with her office staff have been good. Her office manager's name is Claribel and that makes me smile whenever I see it on an email - I'm taking it as a good sign.  Of course I internet stalked her to find out what I could about her. She's been married for a long time to an excellent sculptor and that makes me feel good about her, too. My first consult with her is on Feb 20, Aunt Peggy's birthday.  She happens to look like Aunt Peggy a little so I'm adding that to the pro column. 

I was REALLY hoping I could get my triple dose of chemo yesterday and be done but it just wasn't the best decision. It was better for my fingers, bones, eyelashes and eyebrows to sign up for 4 more single doses.  I'm just going to suck it up and tough it out for a few more weeks. Friday, Feb 9 will be my last infusion.  Also my last appointment with Dr. Jackie for a number of months.  I'll miss her constant reassurance and straight talk.

It's been confusing me a little why on earth I'm feeling shaky about ending chemo. It should feel like a a big celebratory graduation, and it does a little. But mostly I'm scared.  What if it didn't work as well as it needed to for my triple negative cancer? If I'm not actively poisoning the cancer every week is it just going to lurk in my body and be left to its own devices?  Etc., etc.  One of my on-line chemo buddies recommended the below video from Joan Lunden's series that explains that what I'm experiencing is pretty common. It's a good video, but Joan's wig is awful - you'd think she'd hire a better hair stylist!   Here's a link if you want to watch it:  
"Chemo Is Over! Why Am I Crying?"

Other big news is that I got a FitBit.  I bought it mostly to monitor my heart rate that's been really high lately.  I think it's mostly on account of my being incredibly out of shape. Could be the anxiety of everything that's going on. Anyway, I'm keeping an eye on it.  Also my steps like every other freak in NYC seems to be.  Sadly, I'm no where near the 12,000 target of my friends at work.  This past week I was at 3,000. They suggest for us grossly unfit people to only raise your target by 1,000 per week. So, today I'm going for 4k!  Thank God it's warmer out.

Let's see, what else? I'm starting to get some stubble on my head. You can't really see it but it feels like sandpaper instead of satin.  Has to start somewhere! I'm thinking by my birthday I'll look normalish again. I have an appointment with Memorial's dermatologist in 10 days. He told me he'll help me to get my hair growing back as quickly as possible.  There's so much snake oil out there for hair regrowth that I'm hoping he'll have real solutions.

Acupuncture might also be in my future. There's evidence that it can really help with the neuropathy in my fingers and Memorial has an oncological acupuncture dept. I have to find out if my insurance will cover it. Maybe it will if it's through the hospital.

Okay - that's all the updating I can think of. Stay warm everyone!!

Love, Mariane