Zebra Attack

I'm a daughter, sister, wife and mother who worked in private equity and was blindsided by stage IV carcinoid cancer in September 2012 at the age of 27 after a surgery on my first wedding anniversary.

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Triple Crown

My March MRI showed a cyst on my remaining ovary. June scan showed that it had grown and become more complex, ultrasound showed more complexity than the MRI did (solid area, walls, etc.).

Dr. T (oncologist) and Dr. A (obgyn) are my two most trusted doctors and the most conservative when it comes to protecting my lady bits and balancing treatment with quality of life. They both think it needs to come out. And if the last older is coming out might as well take the uterus.

Last time I went to a gynonc who was supposed to bring in a NETs surgeon to look around. Supposed to as in we had multiple conversations, coordinated with the NETs surgeons to make sure one was available and confirmed in pre-op but then decided it wasn’t necessary. Less than 6 months later I have lesions on my liver showing up on scans... would’ve helped to have some eyeballs on the situation to have a better sense of growth rate but, you know, surgeon ego.

This time I went to a NETs surgeon first and and going with my obgyn’s recommendation for gynonc. Made a plan with the NETs surgeon for if the surgery is at HUP or at Pennsy (my obgyn is at Pennsy so those are the gynoncs she knows but one operates at both hospitals). I don’t know why I thought it was possible but I was hoping to just schedule the surgery with the NETs surgeon and his office would call in a gynonc. But nope. I have to see the gynonc first. Of course she’s part of the same practice as last year’s gynonc and the office staff cannot wrap their minds around me switching surgeons within the office. Something so simple as scheduling an appointment took a visit to the front desk and 6 phone calls, but it’s finally scheduled for next week when the hubs can’t go. I just want it over with. I’ve been having panic attacks during the night and paralyzing anxiety during the day. It’s been letting up some as I work through things like deciding on surgeons, lining up care for the Little Man, finish projects promised to other people, etc. other than my first surgery that gave me my diagnosis, this one has the most implications for life afterwards. Last year’s surgery and it’s aftermath are still fresh in our minds... in this case knowledge isn’t power. We also know this one will be harder and it’s weighing heavily on both of us. Last time I still had one older to help stabilize hormones but this one will be a hard stop. I don’t do well with big hormonal shifts. So right now I’m just pushing through wanting to just be done with the surgery so I can move on and figure out how to deal with it. I’ve been in scheduling limbo for about a month already and the longer this drags out the more it messes with my head, the more pain there is and the longer I feel like life is on pause.

Update since I’ve been writing this while waiting in several different areas today: decided to have the surgery at Pennsy and reached out to my obgyn to start figuring out hormone replacement. Feeling better about making progress and wondering what the prize is for a Penn surgical triple crown (Presby, HUP and Pennsy).

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I’ve been trying to live in denial about cancer crap lately in an attempt to save some semblance of sanity, but it’s getting to where I can’t keep ignoring it. Normally I’d have a full plan to deal with each issue but I really just don’t want to think or deal with any of it.

July - MRI report notes a metastasis on my liver

September - everything starts falling apart at F-bomb’s preschool

October - follow up scan confirms the metastasis; all hell breaks loose at preschool, push off January appointment with Woltering to February

January - new preschool, my body starts crashing but I write it off as just being exhausted from the preschool drama, push February appointment to March

February - the complete exhaustion doesn’t get better, cue the flushing to start again, cancel Woltering appointment instead of playing the rescheduling game

March - MRI reports a second metastasis on my liver... “in retrospect” the second spot was on the October scan but they missed it in the report... great news for someone who has trust issues with false negatives

To Do:

Keep on keepin’ on with the Lanreotide butt darts

December labs (almost time for March labs... like I said... denial)

See new doctor about my hip - my doctor moved out of state, the second joint injection isn’t nearly as effective as the first and yet another round of PT isn’t helping. Surgery has a crazy long recovery and doesn’t always fix the instability and pain. After 5 years I’m almost frustrated enough to just ask for a full hip replacement. My body thinks it’s 70 anyway. I’m going to ask for another MRI to compare the tear to 15 months ago to see if there’s any change and figure out a gameplan from there.

But first, a nap.

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Why am I surprised?

Nurse called with my CT results today... apparently it was a good thing that I took the antibiotics because I have a fluid collection behind the main incision. I already had an appointment scheduled for tomorrow so she and the doctor are going to come up with a game plan. If there's a spot that's still open the dr may be able to drain it in his office, otherwise they'll send me down to interventional radiology for an ultrasound guided drain placement. Sounds fancy. No big. Except that I have a HUGE phobia of things (needles, tubes, pins, etc.) sticking in/out of skin. Just thinking about it makes me want to puke. I've gotten better with needles but tubes have always been my bigger issue... I'd almost rather have surgery again, I'm that big of a baby about it.

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One Solved Mystery

What’s better than having an allergic reaction to an antibiotic? Not needing to have taken the antibiotic in the first place!

My NP has made it her mission to figure out what the hell is going on with these incisions. She called yesterday to give me an update. One of the doctors she showed my belly pic to solved the mystery. It wasn’t an infection, that’s why it didn’t respond to the first antibiotic and didn’t make improvement very quickly with the second. It was an allergic reaction to the wash they used to prep my skin.

“But they used the wash over my entire abdomen, why would there only be reactions around the incisions,” you may wonder.

Good question. It’s the thought that originally ruled out an allergic reaction to the wash. Only the areas around the incisions would have reactions because those are the areas that the wash got inside of the skin. Somehow during the surgery the wash got into the incisions and my body was none too happy about it. But now I just sit and wait for it to clear up. It can take a couple of months to fully resolve and there’s nothing to do to help it along, but at least I don’t have to keep taking those nasty antibiotics.

Angry Incision Mystery is now closed.

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So I made it through little dude's birthday, went to NYC for my friends' wedding, and was looking forward to recovering on Tuesday when F-bomb went back to school (Monday was a holiday). Ha. Haha. Ahahahahahahah. (That was life laughing at me.) F-Rex woke up with a fever so we spent Tuesday and Wednesday hanging out. I loved the cuddle time but my incisions can't say the same. His fever only lasted one day so he finally went back to school on Thursday. I had a nice little fast day and showed up at radiology at 12 for a 1:00 CT as instructed. I was miserable but assumed it was from not eating or drinking, especially with the crazy antibiotic. Hahahaha. They were supposed to tell me to be there 2 hours early for the prep and of course couldn't get me in later the same day. It was probably for the best though because I barely made it home as it was. F-Germ shared his fever with me. Fever, chills, muscle aches, congestion, no big. Until I woke up Friday with a rash over my ENTIRE body. After about 5 delirious phone calls back and forth to my surgeon's office they decided to just stop the antibiotic. I may have had a reaction to it or it may have been a histamine flare triggered by the fever. I'll call Woltering's office this week to pick their brains. In the meantime I have my barium smoothies chilling for a CT in the morning. (The CT is so they can rule out something hiding inside causing the infection and some other swelling/tenderness. I think the other areas are swollen lymph nodes but my NP just doesn't like how things have been going. She said not to read into it, it's more for peace of mind.) The rash is going away and no fever today. I don't want to jinx anything though.

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Lucky #7

6 surgeries without complications... lucky #7 seems to be making up for them. Allergic reaction, infection and now an open incision because the skin glue went into the incision. I am not a happy camper.

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So my gut was right - the zebra’s back

I went to New Orleans for my regular 6 month check up with Dr. W. Here’s what happened there:

I’m flushing a lot more than I thought. When we started talking I felt what I always wrote off as a blush, but he said it spread all the way down my chest which makes it a flush. He noted to the nurse who came in right after that it was a classic presentation of flushing how it spread and that while it’s commonly thought that carcinoid syndrome only happens with liver mets, that mets to the peritoneum (which I’ve had) can go systemic as well and cause symptoms. Since my serotonin levels are okay he thinks it may be histamine driven so we’re going to experiment with Pepcid and Benedryl to see if that helps.

I’ve lost so much weight the system flagged me. My BMI is 18.8 and they consider 18.5 to be malnourished. I also have some reactive hypoglycemia going on so I need to be on a strict eating regime to gain some weight.

Need to start Lanreotide (newer injection replacing Sandostatin/octreotide injection). At least it’s only every 4 weeks instead of 2 this time. Given my scans and symptoms he wants to see me in 3 months this time.

Surgery

It happened. I made it home (late) the same day too! This was probably the best my pain and nausea have been managed, but it came with some other side effects like dilated and blurry vision for a couple of days. I apologize to anyone I didn’t get back to... it’s probably because I couldn’t read. They removed my ovary and tube mostly laparoscopically... the main port ended up bigger than usual. These incisions are higher than some of my others which seems to help me not have as much pain walking.

Good news - I haven’t had the shooting pain and tingling in my leg. It looks like the theory of this being the cause of the pain is holding water.

Surgery was a week ago today and I saw the nurse today. I have a nice infection going on in my main incision that’s getting worse despite starting some heavy antibiotics over the weekend. I started a new one that leaves fun GI side effects for weeks to months after finishing the course. Hopefully it shows improvement by Thursday morning because I don’t want to find out what the next step is and F-bomb’s birthday party is Saturday!

Pathology report is in. What was showing on scans was actually two benign cysts on my ovary. They also found some smaller neuroendocrine tumors on the paratubal soft tissue (the soft tissue that keeps the fallopian tube in place... don’t quote me on that though).

So my gut was right - the zebra’s back.

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Oh, hello, 2017

I sincerely apologize for the unanswered calls, texts, messages, emails... I've been in survival mode for a couple of months now. We finally started getting some answers so here's what's been up.

Our dog broke a declaw so we took him to the vet on the 2nd... needed surgery. While they were doing that surgery they biopsies what we thought was a fatty tumor and it was cancer. Thank God he broke that declaw bad enough to need surgery because they caught the cancer early and he should be all good now - stitches even came out yesterday.

At the end of December I had a gallium scan (new PET/CT for NETs) which was negative and an MRI of my spine for ongoing pain in my back/hip. Despite two months of physical therapy and the area getting stronger, the pain wasn't getting better. The MRI noted something in my pelvis so I asked my GYN to take a look. She ordered an ultrasound which showed a 6cm complex cyst, the the follow up pelvic MRI showed it as well, so I was referred to a GYNONC.

Besides the pain I've dropped about 15lbs since Sept/Oct, started flushing on Thanksgiving, and have been so dead tired like I was when I was first diagnosed. Like can't get out of bed tired. Taking a shower is an accomplishment tired. Not a comforting combination.

At first the GYNONC recommended a follow up ultrasound in three months but after a physical exam and going through my history that option went out the window. Apparently neuroendocrine cancer loves the ovaries. This cyst inside my ovary is sitting behind my uterus in the cul-de-sac... which happens to be the very place I had a tumor before. It's hard and could very well be the cause of a good portion of my pain. So surgery is scheduled for Feb. 7th to remove my right ovary and tube. I'll be first on the docket and should be home the same day, and apparently stealing the one ovary won't mess with hormones or any of that stuff - the other just picks up the slack. He offered to do the surgery on Tuesday but I see Dr. Woltering on the 31st and feel like it's an important appointment to keep. This could be a benign cyst, in which case it still needs to be removed due to its size, or it could be a sneaky NET... we'll find out in a couple of weeks.

In the meantime I’ll be playing with my dinosaurs with the little man.

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Good New Tuesday (even though it’s Thursday now)

It’s that time of year again, when I brave the humidity and heat of New Orleans to see Dr. Woltering.

Good news: CT and blood work were clean.

Ehh news: I need to do an MRI and octreoscan - we were starting to alternate scans every six months but I need all of them this time as a new baseline post-op.

GREAT news: No more Sando injections until something shows on my scans or blood work.

Poop news that I hear every time but still feel the need to confirm: 100% chance of reoccurrence.

I’m ignoring that last piece and enjoying my needle-free bootay while I can.  That being said, I just got a ton of injections in my back and hip today for pain, but in a couple of days those will help me feel better.

I see Dr. T tomorrow to do a little happy dance and schedule my scans.

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Surgery and Stuff

The last few months have been a whirlwind of weddings, babies, new job training (for the hubs which included 3 straight weeks away), visits from family, baby man starting preschool and going to camp, HVAC system replacement (that wasn’t a fun check to write), surgery, chasing a toddler, feeding a toddler, not sure what else.

Surgery: Hernia Henry was acting up so the docs agreed that it was time to patch him up, steal my gallbladder and take a look around my insides.  No tumor surprises this time!  Things looked so good that I’ve been granted a 6 week hiatus from the sando shots.  That takes me to right after my appointment with Dr. Woltering at the end of this month so Dr. T and I will regroup after that. I’m still healing up but this recovery has been better than the last two. I’m taking advantage of this break from shots with the Great Purge of 2015... getting rid of clutter.  It’s amazing how much more time I have when I’m not hanging out at the cancer center all day or dead tired from the shots.

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I'm still trying to shake a cold that has been hanging around for a week and a half now.  If this doesn't end soon I'm going to be on a watch list for the amount of Sudafed that I've been buying.  Right now it's too late for Sudafed but too early for Robitussin PM so bear with me.

Sando - Started doing injections every other week. This week was the first one after only two weeks so next week I should feel better or worse than I normally do a week after the shot.  Fingers crossed it's better.

Scans - I had an ultrasound follow up to my CT and it confirmed that I most likely just have an ovarian cyst and there's nothing to suggest that it's malignant.  I've heard that before, but I trust these people more than the last group. I have a follow up in 3 months (well, 2 months from now).

Surgery - Of course Hernia Henry starts bothering me as soon as hubs leaves his job selling mesh for hernia repairs (among other things). Since it's getting worse, Dr. T said it's probably time to do something about it. I saw Dr. Karakousis and the plan is to have Dr. Roses (his partner) remove my gallbladder laparoscopically using my belly button (aka Hernia Henry), Karakousis will look around for sneaky tumors, and they'll repair the hernia at the end. Of course I thought I was way ahead of the game giving all of my scan CDs directly to radiology when I went for my ultrasound in January, but of course they didn't upload the images like they were supposed to so Karakousis didn't have anything to look at for my appointment. I'm hoping to schedule the surgery for May when my mom is going to be here anyway but I can't schedule it more than a month out so hopefully in April we'll have a better plan.

ER - Apparently my body missed being in the ER since it's been over a year. Last week about an hour after the nurse started my IV for fluids at home I started feeling really bad, couldn't catch my breath, talk, move... not cool. I managed to start doing the moving thing and talking a little bit so hubs called the home nursing people and they told him to take me to the ER. on the way and while I was being triaged I almost passed out a few times but didn't.  Of course I was pretty much back to normal by the time I saw a doc and I felt like an idiot, but no idea what happened.  All is well now.

That's all that I can think of for now...

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Happy, happy, happy

I'm back in the land of the cold after being spoiled by the New Orleans sun, even though I spent most of my time laying in machines in radiology.

Bullet point summary because my brain isn't functioning all that well after waking up at 4am for my flight home:

Dr. W is very, very happy about my scans and labs

He said my crashes post-Sando injections isn't due to the med peaking in my system, but is from the initial drop off (there's a spike, drop, then the longer peak with each dose). He said increasing the frequency to every 14 days instead of every 28 should get rid of that crash.

I asked if my reaction to the Sando drop indicates liver involvement (carcinoid syndrome is linked to the liver) and he said no - the activity could be anywhere but since we don't know where and it's not showing up in my labs or scans that the only thing he'd want to do right now is adjust the frequency of my injections.

Once lanreotide becomes regularly available and covered by insurance I should switch to that in a millisecond.

One thing showed up on my CT and is probably nothing, but he said we're going to assume it's cancer until we know it's not.  I have an appointment on Monday with one of my local docs to see if we can figure out what it is.

Time to try to sneak in a nap.

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Life by the Nums

After an agonizing 3.5 week wait (note to Future Self: the week before Christmas is not the best time to have specially-processed blood tests drawn), I finally got my tumor marker results. I've lost a lot of sleep and had a couple of panic attacks over the past 3 months waiting for these numbers. Fortunately is was all for naught because things were back in the normal range. Thank God. The reality of my next round of tests is sitting in as I received 9 appointment confirmations from Ochsner in the mail this week. 9 appointments (mostly scans) in 28 hours plus 1 to be scheduled when I get there... I still have hope of sneaking in some Cafe Du Monde time for frozen coffee and beignets.

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WoW MoM -- A Documentary About Cancer & Gaming

A documentary about a grandmother who uses World of Warcraft to cope with her life-threatening cancer.

Check out this documentary about a woman who started playing World of Warcraft to help cope with her NET cancer.

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The #globalNETsurvey quality-of-life results are in! Spread the word on the impact of living with this rare cancer http://thndr.it/1s8JSeB

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Reasons why research for better treatments and diagnostic tools as well as increased awareness are so important.