New Beginnings

Well it's been a long time since I posted. The kids are teens and almost 15 now.  They are so tall, I wasn't ready for them being taller than me (I'm 5'11"). They started high school last month. Last year, we applied to Chicago Public Schools that require tests (and grades) for admission and they both got in, so we bought a house in the city! Then within days my mom was diagnosed with stage four ovarian/fallopian tube cancer. So the year has been a bit of a blur. She's had multiple surgeries and multiple rounds of chemo since then, which she is almost done with now, at least for now. She turned 78 in May and will be fighting this for the rest of her life unfortunately. Since her diagnosis in March, we've spent every possible break in Wisconsin with her instead of on vacation. 

We "moved" over the summer, but since we are keeping our house in the suburbs (at least for now) we didn't really move that much. We bought new stuff for the new place. Thank goodness for the minivan, though it doesn't fit in our new garage. We are loving Old Town so far. The kids are getting settled in and making friends and getting ready for their first HOCOs. Marielle made varsity dance/poms so we've been doing football season and gearing up for competition season. It's been 21 years since I left the city (26 for DH) so we are being old in Old Town. Today is our 20th anniversary!!

Celebrating DH's 50th B-day in California last November

Obligatory year end post (2017)

Well hello there.  I had started a back to school post back in September, but then life got really crazy and it didn't happen.  The kids are doing great.  They just turned six and they are growing like weeds and losing and growing teeth right and left, and loving their new school.  We seriously won the lotto.

We lost my step-father in mid-October at the age of 64.  I still haven't fully come to terms with his passing, as it was very sudden at the end.  He was cruising along with his (stem cell inhibitor) clinical trial and chemo (though he'd lost a lot of weight) and then in late August, he got his first bad scan since January (when he first got into the trial).  This indicated that his aggressive cancer was not going to cooperate and since a bad scan gets you kicked out of a trial (insult meets injury), he wanted to qualify for another (this one immunotherapy) at Mayo, that he got into in September.  But it was sadly already too late.  He was willing to do whatever he could to get to watch his grandkids grow up.

We got to be there at the end.  It was eerily like my grandmother, who passed when I was pregnant with the twins, though she got an extra 30 years.  Within a few hours of our arrival, he was gone.

Dave became my step-dad when I was 8, a role he took seriously for the second half of his life and the vast majority of mine.  He loved us like his own, which was no small feat.  He saved us.

He met my mom when I was my kids' age and starting kindergarten and she was starting her new life.  She's doing as well as can be expected.  We just took her and my eldest sister on vacation with us, which will likely be how we do it for awhile, maybe forever.

It's overall been a pretty shitty cancer year for us.  My brother in law lost his dad and my step-mom lost her mom (both to metastatic liver cancer), and I lost a 40 year old high school friend and the twins' best friends lost their grandma who we saw every week at dance (both to metastatic esophageal cancer).  My kids have been to more funerals just this year than I did in my entire childhood.

I had my best year professionally since I went out on my own, but now that the kids are in school full time, I'm thinking of going in-house full time.  I will never be satisfied.

Speaking of that, we finally went to see Hamilton for our November anniversary. It was great.  Get the soundtrack, it's at least half the experience.

Wait for it

Death doesn’t discriminate
Between the sinners
And the saints
It takes and it takes and it takes
And we keep living anyway
We rise and we fall
And we break
And we make our mistakes
And if there’s a reason I’m still alive
When everyone who loves me has died
I’m willing to wait for it
I’m willing to wait for it

Catching Up

So I've totally bombed on the blog this year, like nearly a complete epic fail.  So four months later...  I tried to post about the Hamptons (and separately about their two show houses), but that didn't happen (too many photos and it blew up).  Then we went to Savannah/Hilton Head Island for our tenth anniversary/my 40th, which was hot and amazing.  And I went to Boston for another long weekend, which was cold but great.  The election, and nada... oh well.

My OB/gyne finally managed to talk me into getting my BRCA 1&2 testing done, (since my sister had a young and rare reproductive cancer dx) which I had been putting off, since my other sister was negative.  It ended up only costing me a few hundred bucks, and I'm negative for both, which is obviously fantastic given the prospective treatment plan (double mastectomy-oophorectomy).  Unfortunately for me, they found that I have a different genetic mutation (MUTYH), that triples my risk of developing colon cancer (which is what ultimately killed my grandmother five years ago at 94), which sucks pretty badly.  So in addition to turning 40 and getting another mammogram (which is still awful, but came back fine), I also have to add getting regular colonoscopies (and I already got my first, which thank goodness, was also fine). 

Ironically, much worse than actually turning 40, are the health screeners that will hopefully get me through a few more decades.  Colonoscopies themselves are no biggie, but you have to fast and then slam 32 ounces of what tastes like really bad cough syrup the day before to clean you out, so that's pretty awful.  And how are mammograms still so horrible, like someone somewhere (likely a woman) can't devise something that isn't a torture device?

The kids are doing great and getting huge.  Like I'm going to have two four-foot-tall kindergartners soon enough.  They turn five in five more days. OMG.  So we have... they are in two different schools crazy holidays, parties, birthdays, Christmas, no-break, and up to 40 4-5 year olds for their jumpy house party come January.  And I'm supposed to be starting a new work project, I volunteered and was elected to be VP of his school's PTA, and trying to figure out how we are going to get out of this frozen tundra for a bit.  Thankfully, I put the kibosh on our regular India trip this year.  I just can't deal with being gone for weeks and feeling like death at this time of year on top of everything else.

We finally got around to getting new pics done for holiday cards (better late than never), but we got our first snow storm that day, so we were forced inside his studio.  They are somehow ridiculously more photogenic than either of their parents.

Thankfully, my step father has made it through his chemo, radiation, and now surgery for his cancer as well as can be expected.  Praying for clear scans and as much time as possible for him.

New Schools and Year

It's been a hot and busy summer around here, so I've been off the blogs.  Living and loving real life.  Lots to update:

Marielle has already started at a new school, a local Catholic elementary, as it offers preschool for the same odd partial day that her brother will be in school.  It's her third and last year of preschool, though she'd be ready for kindergarten, if only she were a wee bit older.  It is also likely where she'd stay if we were living here and going private for elementary, but our public schools are crazy top notch (all their schools and others they could attend made this and all lists, which is another reason why we still haven't moved, our district is now amazeballs), so she is likely just going to the one down the street next fall.  This serious little girl is so big and just had to have her cardigan on and buttoned.  She just slays me sometimes.  You should have seen her dance recital, a total pro.

Alistair starts this week at yet another new preschool for his last year, the school district's, after I decided to get him assessed last spring.  He's always been a little slower than his sister (walking six plus months later, potty training a year later, etc.), though not behind his boy cousins, but she is a speedy one, so we weren't that concerned.  He's always been a leftie and sensitive (to sounds, bright light, temperature, feelings in general, etc.), and has had more trouble writing (switching back and forth/ambidexterous, less overall dexterity) and dealing with transitions.  I'd heard good things about the preschool, so we decided to give it a try.  They don't have stringent qualifications if they think they can benefit from help, so even though he has done fine in his other schools, we are hoping that some occupation therapy and extra help will get him really rocking and rolling to begin the all day kindergarten down the street arm in arm with his sister next fall.  He's also taking the bus, so that will be another exciting adventure.  My big brave boy is so excited!

After I put him on the bus, I felt jittery and thought I was really losing it (it's his first ride alone, but his third year of school).  But then I realized later when it didn't subside that I'd mistakenly had some caffeine, which totally wigs me out.  There should be some sort of disability program for mothers with low caffeine and alcohol tolerances like I have. 

My step-father's prognosis is sadly pretty grim.  He is doing well with his regimen of weekly chemo and daily radiation, but his surgery in a month or so to remove what they can of the very large tumor will be very debilitating and long term survival rates are low.  He is continuing to work as long as he can, as he wants to/can, and we are all just taking it as well as we can and we are spending lots of extra time up north to visit.

We just got back from visiting the Hamptons via NYC and Pittsburgh to beach it up and spend some time with my sister and her boyfriend (now officially fiancé, wedding date pending).  Lots of great fun, but enough for its own several posts...someday.

I've already completed a whole new project with my former CMO for the same client as the last.  And we have another international one for them on deck.  Working from home, on my own schedule, making bank with no overhead, using my brain and skills, not selling anything or abusing my social networks. Life is beautiful, so I'm riding this gravy train as long as it lasts.

We finally decided that we are in fact taking a trip sans twins for our tenth anniversary and my 40th birthday next month.  My mom will be busy travelling for her 50th high school reunion (though thankfully for us, my dad was opting out), so my dad and step-mother are coming down and taking on the kids for a long weekend, so we can get away.  We went back and forth about how far we were comfortable going (a few hour direct flight) and for how long (a few days) and also where (since we've been most everywhere within that proximity), but we settled on Savannah, since we've both never been and it's supposed to be fun.  We had such a great time with just an overnight away last year for DH's 40th, you'd think we'd do it more.  We can't wait!!

Today

Today I had my first post pg annual exam. I was due in Feb., 12 mos. after my six wk. post partum, or so my office thought per their many reminder letters.  But when I went in then, the NP informed me that they only do Paps every two yrs. now, so she sent me on my way and told me to come back. These are not typically a big deal for me, so I was not expecting today to be any different. They are converting to e-records, so the first 20 mins. was going through everything they had entered into the system with a nurse to make sure it was correct. We talked through my lengthy history, reviewed my family history (which they had up to date), and then I waited to see Dr. Levin, who saw me through the pg w/the twins.

We talked for awhile and she was concerned that my sister had cancer so young (40). Fallopian tube cancer is a rarer, but close relative of ovarian, so she suggested I look into BRCA testing, if my sister hadn't been tested.  But regardless of the outcome, with my risk she doesn't want me ovulating, so she put me back on BCP (low dose). She said it might be a good idea to just have my tubes removed, which is a relatively minor lap procedure. She also noted after the exam that my cervix is wide open, which she couldn't explain but it is not the way it is supposed to be, so even though she loves to talk about "if (we) have another", if I needed confirmation that my body is in no state to ever due such a thing, "there's your sign".

I couldn't remember if my sister had done any genetic testing after her diagnosis/treatment, so I gave my mom a call.  In my defense, my mother kept a lot of what went on (including initially even her diagnosis in early 9/10) because we were simultaneously dealing with our planned first IVF cycle and then the sudden death of my FIL in India.  She said the testing had been raised at the time, but that since my sister's insurance didn't cover it (she is disabled and receives SSI) and since the next recommendation if she tested positive would be a complete double mastectomy, which my mother had decided she would not put her through, she opted not to have it done at all. Well, that was her decision to make for her, but that doesn't really help my sisters and me, so I have a referral to the ovarian center to see what they say about next steps.

I have no idea if they will recommend the testing based on my profile, or if they do if it will be covered by our private insurance. Based on what we find, we'll decide if we want to do it OOP if that is our only option. I didn't know until speaking w/my mom today that I had great aunts on each side who had either ovarian or another "undetermined" reproductive cancer.   Why on earth had this never come up?  Thankfully, there is no history of any breast cancer in my family.   My mother is a (now retired) RN and mother of four daughters for crying out loud. The common link between all three (my sister and great aunts) is that they didn't have any children (two were disabled, the other was a nun), which raises your risk (pg and BFing, like BCP, gives the ovaries a preventative rest).

So it's a lot to digest, but it seems we may be at just the beginning a new venture into the medical abyss. As much as I abhor and avoid drama, life is certainly never boring over here.  I guess the good news is I have a clear baseline mammogram/b ultrasound from 2010 and my lap that year didn't turn up anything out of turn (not that they were looking necessarily) and my exam today was otherwise fine.  I guess I can also look forward to trading up in the boobie dept. if all goes south.  I'll be sure to post what I find out. Any experience you may have is welcome.

My little loves

Everyone has a story

While I already sadly have cancer on my mind as we mourn my dear aunt, in light of Angelina Jolie's Op-ed in the NY Times regarding her decision to have a prophylactic breast (and at a later date ovarian) removal after learning she had the BRCA1 "cancer gene", the Times is revisiting their Pulitzer Prize winning story from 2007 about other women who've undergone this procedure.

The woman featured in the "Previvor" story, Dr. Deborah Lindner (the original story and her recent video update) was the OB/GYN who I met/saw the day of our anatomy scan as part of our rotation, when we found out we were on our way to losing the twins, and she told me there wasn't much they could do for me/them/us.  My regular OB (Dr. Levin) was unfortunately on vacation late that August and ironically the one in the practice of eight who ended up delivering the babies in Dec. (fellow twin mom, Dr. Kamel) was one I had never met before the day they were born.  

Anywho, upon promptly securing an MFM, the rest of the practice was very supportive of us and our desire to try to save our babies (though it later took half the practice to remove my cerclage).  I didn't write that much about all the details of what happened at the time, it was just too painful and difficult and I had already switched into crisis mode.

While it crossed my mind at the time, I have no way of knowing whether Dr. Lindner's prompt departure from the practice after our episode with her had anything to do with our case or not.  She now apparently works at a vein clinic in the city (and is a brunette).  If she left voluntarily, I can only guess it was likely due to her young family, which she's had since her surgery, as the scheduling demands of being an OB/GYN are rigorous, unless you can opt out of deliveries (like my old gyne had by the time we got around to TTC).

Of course the irony is not lost on me that a physician who is so proactive about her own health would be so nonchalant about that of her patient. But if my medical experiences of the last several years has taught me anything it is that while medicine is amazing, it and doctors are fallible and in the end you have to be your own advocate and not take one opinion without seeking others.

We love you Laura

My aunt Laura passed away earlier this week. She was a young fifty-five, always so sweet and cool and chic.  I idolized her when I was a kid, probably because she didn't have any reason not to be sunny, unlike my divorced working mom of four.  She had breast cancer that we'd thought she'd beaten, but then it came back and had spread to the muscles around her heart, and even all her fight and the best care in the world couldn't beat it. She and my uncle (my father's next younger brother) were married 30 years and lived in Palm Beach Gardens, after first meeting in Chicago.  They were quite a couple...  She the sorority girl turned travel agent (remember those?) turned SAHM and teacher.  My uncle the golf pro/model turned small business owner.  When I was a kid, we'd often make the long drive from WI down to visit them (usually in the hot hot summer).

She was the first person I knew to do IVF (in the late 80s, for secondary infertility after having a son promptly after they were married and waiting years for another child), though it didn't work and she subsequently got pg on her own w/her daughter (who just turned 21). She was also the first person I knew to build her dream house, which we got to witness (it was the summer my sister Em spent with them, so of course she did the same a decade later).

When I was dating a guy who lived in Miami (in college and just after), I would always drive up to visit them when I was in their neck of the woods. It was on one of these trips, about a decade ago, that I saw her last. I guess I had a bit of a falling out with my uncle, who is as terribly opinionated as I am though he is also a rabid Republican and racist and has a thing for grudges, and we just kind of fell out of regular touch.  My family is weird like that, which is sad.  I'd heard through the grape vine last year that she was sick again, but hadn't been able to get down to see her.  They weren't able to travel up to my grandma's big 90th party last May.  She, thankfully, made it long enough to see her son have one of his own, the same week the twins were born. 

With Mother's Day this weekend, which is already know as "Thanksgiving Day in May" at our house, we'll be thinking of her, remembering the good times and just how lucky we are to have our health and our family.

A card campaign

My family and I really appreciate all the thoughts and prayers for my special sister Sara over the last few months as we've grappled with first her cancer dx and now her new treatment plan. Now that her five month chemo run is beginning on Monday, my younger sister Jen came up with the idea to start a card campaign for her to help lift her spirits while she is dealing with the effects of the chemo. So my sisters and I are getting our cards together so that she gets something from us everyday and rallying as many troops as we can find to help us out.

She LOVES getting mail (she LOVES people and is an absolute doll) and we know that she would love to hear from anyone who is thinking of her and wishing her well. If you want to make her day, please send a card, note, or anything with a teddy bear on it (her favorite) to: Sara G., 2719 Keith St., Eau Claire, WI, 54701. Many many thanks! :)

It takes a village...

So I finally have a real update on what's happening with my sister Sara. For a refresher, she was dx w/fallopian tube cancer after having a hysterectomy in September. Then she had open biopsy surgery where they tested some 70 tissues in her abdomen to check for metastasis. The outcome was that is was stage 1 (contained), and grade 2 (from 1-3, moderately aggressive cells). This was the cutoff for not needing chemo, so that that was not part of the plan.

Well since then, since this type of cancer is so rare (esp. in someone who's only 40) her surgeon presented her case at a pathology conference. One of his colleagues pointed out that from the slides he thought it was grade 3 tumor cells (most aggressive) rather than 2. So then back home all the local pathologists got together, and out of the 11 of them, they split 6 (3) to 5 (2) on the grade. So the surgeon (who we all now love even more than before) reached out to leading pathologists in Boston. The two of them agreed that it was stage 3. So 3 it is.

So she starts 18 weeks (6 rounds, once every three weeks) of chemo on Jan. 31st, so it will go into May. She already got the button installed on her chest, so she won't have IVs each time. She will be on two different drugs, which I guess "counteract" each other so that the effects are somewhat less awful. But she will lose her hair. :( She will be given meds for the nausea and will be on whatever modified activity she needs to deal with the fatigue.

The chance of recurrance and mets with chemo should be low, which is good since the prognosis for fallopian tube cancer is similar, but even worse than ovarian, and I think most know how bad that is. My mom was not willing to risk this, given the change in grade.

Though apparently there is a debate going on in the family, primarily between my RN Mom and speech pathologist sister, the latter who thinks that the chemo will be too much for Sara. I agree with my mother, based on what I know, that she is much tougher than we give her credit for and did much better with her two surgeries than any of us imagined she would. So we'll see.

One step forward, two steps back...

Good news/bad news

This is how things work for us, but you know you gotta worry about the big stuff and let the other stuff slide...

Sara is getting ready to head home tonight, she is doing so well. What a trooper! All her path reports just came back fine, her other tube had a benign cyst. We are just waiting on her wash report (to see if there are any free cells that are cancerous). If that is negative, then she can avoid chemo, which is no small blessing.

My niece also got a clear today from the plastic surgeon @ Mayo that she won't need any more surgery, at least in the short term, which is also huge.

S's 3rd SA came back today. Count was amazing (as always), morphology up to 4% (but still low), motility down to 48% (this is the first time this has been an issue). Since it's too late to do much for our cycle, we confirmed that we are doing ICSI. But we are looking into supplements, in case this isn't our last cycle.

Boy, we sure do keep the doctors and surgeons busy...

Sara update

After two hours of surgery today and 70 (yes, I said 70) biopsies, Sara is recovering at the hospital. She will be there for another 3-4 days, depending on how things go. We could know something from pathology by that time or at the latest next week. The surgeon said the remaining tube looked like the first (i.e. cancerous). Thanks for all your thoughts and prayers.

T&P request for my sister

Today is her big surgery day. Since fallopian tube cancer is treated like ovarian cancer, it needs to be staged in what seems like a very medieval way to me. She will have open surgery, from her sternum to her pelvis, where they will biopsy all tissues in her abdomen to see if there are any cancer cells anywhere. This will determine her treatment. Any and all thoughts and prayers are much appreciated.

And the hits keep coming...

I've been thinking about putting together a post on India, which I may still do. But I've little time to look backwards given the rate at which things are happening to us right now. S returned home tonight from 20 hours on a plane while I was at class and he's already at urgent care. In addition to his traveler's diarrhea (which thankfully I got antibiotics for, which I used to kick mine), he also has some viral/flu infection (though we've already had our flu shots) and pink eye. The poor guy. And he has to drive 3 1/2 hours each way to and from Iowa tomorrow for work.

I talked to my mom tonight before class, and she let me know that my eldest sister Sara, who is cognitively disabled and lives with her, was found to have fallopian tube cancer (which is extremely rare) when they did her recent hysterectomy. She is only 40, but as she won't be having children and was having lots of pain, the Dr. thought it was time. She will have to have many more tests, and another (this time open rather than lap) surgery. But we are all just hoping that she doesn't need chemo. I can't imagine. My mom waited to tell me because of FIL's sudden death and our trip.

So if I'm supposed to not focus on not being able to have a child, having a sibling diagnosed with a serious disease, losing a parent, and having two terminal grandparents is certainly one way to put things in perspective and at the same time make you question how so many bad things could all happen at once.