Triple Threat

Since my diagnosis I've, naturally, been reading (thus far only positive) books on the subject. One of them is Crazy Sexy Cancer Tips by Kris Carr. I had actually seen an Oprah show with her years ago so when cancer started to be part of my personal vernacular, I remembered her story and sought out her books. One of the chapters in this particular book is entitled, Go Ahead--Use the Cancer Card. This card comes with some perks including swiping it for the following reasons:

No I can't do the dishes. I have cancer.


I need to rest. I have cancer.


I regret to inform you that due to cancer, I will not be able to attend your "fill in the blank of whatever you don't want to attend".

Unfortunately, when dealing with loads of phone calls to cancer hospitals, pulling out your cancer card is, well, not so effective. That's when I realized that I have two more cards in my arsenal...

The Infertility Card
The Adoption Card

And boy, those two worked magic today.

Me: I'd like to have my slides sent to Sloan-Kettering for a 2nd opinion.

Rather brusque woman at NW who is the keeper of slides henceforth known as Matilda: Your slides have already been sent to MD Anderson.

Me (not understanding that they send originals--I mean, I JUST found out I have cancer and now I'm expected to know how this process works?!): Oh, ok. So how would I get Sloan-Kettering to review my slides? 

Matilda: You will need to call back to see if they have been returned.

Me: Is there a time-frame for that? I don't really want to call you every day...

Matilda: I don't know how long they may keep them. It could be today, it could be weeks from now. I don't have the time to keep up with everyone's file on a personal basis so I'm... blather, blather, blather, I'm not paid enough to keep track of these things....yada yada.

We go back and forth a few more rounds, getting nowhere so...

Me (whipping out my Adoption AND Infertility cards--this is no time to be frugal): I'm sorry but I was just diagnosed and I'm feeling a bit overwhelmed. I have 2 two-year olds, one of them I finally was able to have after YEARS of infertility and then we just got back from China with her orphaned sister who had a cleft lip and palate. I just have so much on my plate right now and my priority is trying to just stay alive so that my children won't be left motherless, especially Lucy since she has already lost one mother in her short life....

Matilda: OH HONEY! 

Lengthy discussion about how pathology slides are prepped and sent, what the steps are, how long that will normally take, etc. etc.

Let me just pull up your file here real quick...yes, I see that MD Anderson has actually just requested more slides and these are to be unstained with new tumor samples. That means they are being prepped now but probably won't go out, because of the holiday, until Tuesday. 

Me: Oh. That long? 

Insert well-timed out-burst by Lucy beckoning for my attention, and me, sotto-voiced, telling her that "Mama is on a very important phone call; can you please wait just a little bit longer and then I'll give you something to eat". 

Heh heh.

Matilda: Let me see what I can do for you. Oh yes, the slides are actually ready to go. I'll be sure they get out in today's mail and they should be there by Tuesday. My name is __________ and you can call me back by the end of next week to get a status update. Do you have any other questions that I can help you with?

Me: No, I think you covered everything that I can think of. Thank you so much for all of your help and insight in navigating this process...it's a bit overwhelming to say the least!

Matilda: I understand, now you just go love on those babies and give that poor orphan child some food!

Plane flight, hotel, taxis in Houston and NYC for 2nd opinion visits: $2,500.

Groceries for new, improved, mostly vegetarian diet to improve health: $200/week.

Use of Adoption and Infertility cards to speed up paperwork: Priceless.

Should I be flattered...or concerned?

I received notice yesterday that I got into MD Anderson's sarcoma hospital in Houston. My appointment is Wednesday, June 20. Len and my mom will hold down the fort here with the girls while I go to Houston for a few days. They ask that I stay 5-7 working days after my appointment in case they need further testing but I'll need to head back by Saturday as my mom will be leaving shortly after that. I'm planning to take a digital recorder with me so that Len and my mom will be able to hear the consultation when I get home.

But the better news is that I am meeting with Dr. Raphael Pollock. I just called up and asked to see the person responsible for writing the article that my friend Paivi had sent to me. That's when my Patient Access Specialist told me that he no longer sees new patients, especially if they haven't been specifically referred to him via their oncologist. So I sent all my information anyway, including my slides and MRI scans, and now I'm in!

I'm not sure whether I should be elated that I got in with someone who has studied desmoid tumors for a living and is interested in "the development of novel therapeutics for this disease" or if I should be worried that my case was bad enough for him to take me on as a patient.

.

Another one bites the dust

Sigh. Another sitter down. You might remember that just recently we lost a sitter but were lucky enough that I had been interviewing and Marissa could start immediately. Things went along well for a short time and then, well, things fell apart. First there was this...

 

 

Yes, that is our huge sisal rug with every color of playdoh that we own smashed into it. This is what is left after trying to pick it out. Since Monday.

So I got home on Monday and we're chatting about how the morning had gone and suddenly I look in the living room and see the rug. She said, "Oh yeah. Sorry about that. We were doing art on the table and some of it spilled on the rug. We got up some of it."

So there was a discussion about art, 2 year olds, rug, PLAY DOH, and why the hell did it not occur to you to either A. leave the table where it was on the wood floor or B. move it into the kitchen?

So yesterday I was gone again for another cancer consult from 9am-1:30pm. I come home to find Kate's diaper so full that she has soaked through her pants and onto the sofa. I asked Marissa why Kate was so wet. "I was putting Lucy down for a nap and didn't get to Kate yet." In my head I'm thinking, This wet diaper has been going on longer than it takes to put Lucy down.

So, she leaves. Lucy wakes up after only about 25 minutes of napping. I go in to find her windows wide open, no sound machine on (which were in the instructions I left for how to put Lucy down), and she is soaked through her pants and onto the sheets of her bed. A diaper change also reveals a poop. Never, in the 7+ months that we've had Lucy, has she ever pooped in her sleep nor has she soaked a diaper enough to wet her pants. This means that she wasn't changed before naptime either.

So I called Marissa today and asked her how many diaper changes she had done for them and she said, "Oh, I guess I just didn't think about checking them."  Seriously? They had been to the park and had not only had water there but had also had drinks with their lunch. So I told her that diaper changing a non-potty trained 2 year old is Babysitting 101 and she would need to find other work.

So now you're probably thinking that she's just young, a college student or even a high school sitter, right? NO. She was born in 1969. She's only 3 years younger than I am.

Finding childcare sucks. Finding responsible, nurturing, capable childcare seems impossible.

Nana to the rescue. She arrives soon and will be here for 3 weeks to cover all of my oncology appointments and Lucy's speech therapy. And to help me interview sitters...again.

Kite Festival!

Saturday was just a glorious day for a kite festival! We walked over to Montrose Harbor and met up with Sara, Gustav and Lina.

 Did you notice that Lucy prefers the Caucasian baby with blue eyes while Kate prefers the Asian baby? I think it's quite cute and probably is because that is what they see every day. I mean, they look in the mirror sometimes but most of the time they are looking at each other.

We spent a lovely afternoon trying to fly a kite, eating lunch and snacks and generally just enjoying a great Chicago day.

Lina was great about sharing her veggie stix.

 

 

 

Christy, Fernando and "other" Lucy happened by and joined us for a while. Christy and her daughter are in my Thursday mama/play group.

 

 

A great time was had by all and the girls conked out on the stroller ride home so both took naps (yay!). Thanks Meme and Papa for the cute matching dresses!

On another note, I took a chance and gave the girls a quinoa stir-fry that I had made for Len and me tonight so we could all eat together. Amazingly, the girls loved it! The only bit of problem they had was that the veggies were not cooked into soft submission so the pieces had to be smaller than normal in order for them to manage all the chewing required to swallow it. All in all though, a success.

This is Lucy saying "CHEESE!"

Kate had a mouthful of kale in this shot...

Leftovers for tomorrow's lunch...yum!

If you are interested, here's the recipe:

Cook 1 cup of quinoa and set aside. Meanwhile, add 2 TB of olive oil to hot pan. Add 1/2 tsp mustard seeds and 1 tsp of whole cumin seeds to hot oil. Saute until seeds pop. Add a chopped onion and saute until onions soften. Add kale, chopped carrots, broccoli, cauliflower (really, whatever veggies you fancy--this is just what I put in tonight) and some water. Saute 3-5 minutes until veggies are tender but still a bit crisp. Turn off heat and add 2 tsp sesame oil, a few sprinkles of wheat-free tamari (or soy sauce if you prefer), and a handful of raisins. Stir. Add cooked quinoa and stir. Serve. I also added slivered almonds to the adult plates.

You can always add whatever meat you want as well (just add it first, after the onions but before the rest of the veggies) but the quinoa is a high protein grain so I left it out.

Whirlwind week

I have absolutely no idea where this week went. I've been more exhausted than usual leading to very early bedtimes for both Len and me. I think the stress of this past month has finally caught up with both of us. Things are coming together though. My files were all sent to MD Anderson in Houston and I've now received a medical record number which gives me access to their website. They have requested my pathology slides. I should hear back from them next week about an appointment time. I've requested the week of June 18th as most of my consult appointments are over by then and the girls have no ballet or doctor appointments either. In addition, my mom is coming for 3 weeks so she would be here to help Len with the girls while I'm gone. I would be gone 5-7 days...I've only been away from Kate once in her life and I've never been away from Lucy. I am more than a little worried about this but part of me is excited about spending 5-7 days sleeping, reading, LOUNGING. Yes, yes, I'm there for a cancer consult but I'm choosing to focus on the "vacation" part of it. Otherwise, what have I got? A cancer consult, alone, with no husband to snuggle and no giggly girls to cuddle. I prefer the vacation scenario.

In the meantime, life goes on with two 2 year olds in the form of...

Planting flowers on the back deck and sweeping up the dirt

 Playing kangaroo

Green smoothies and tea biscuits

Fun with stickers

 

 Which has apparently inspired Yia Yia and Pappou to have their own sticker fun

The girls thought this was a hoot!

Today we had Lucy's checkup with the ENT.

Turns out that both of her ear tubes are still there but her right ear tube is working its way out which is normal. They generally fall out as the ear drum grows. He picked out an enormous amount of wax which was not very popular with Lucy but she recovered quickly and was ready for lunch...my treat to her after our appointment.

Can I just say that taking one kid ANYWHERE is a breeze compared to having both of them by myself. I never fully appreciated it when I only had Kate but OMG, the difference is startling.

This weekend is the Kids and Kite Festival which we attended last year and will enjoy again this year. Sunday Len is taking the girls for soccer with the other dads in our playgroup...I'm hoping to catch a yoga class and some quiet reading time. Looking forward to not having any medical phone calls for at least two days!

Oncology update

It's been a busy week nailing down many 2nd opinion appointments. So far here is what I've lined up:

June 5--2nd MRI with contrast to see if the tumor is growing.
June 6--Review MRI findings with docs at Northwestern.
June 12--Dr. Keith Block, The Block Center for Integrative Cancer Care
June 15--Dr. John Knaus
June 25--Dr. Herbert Beck

I have sent my records to Sloan Kettering in NY via a referral I got from our family doctor, Dr. Ettner.

My lovely friend Paivi sent me a really excellent article on desmoid tumors from MD Anderson Cancer Center in Houston, TX. I highly recommend you read it (just click on the link above) as it really sheds a lot more light on what's going on with me. They mention tumors located exactly where mine is, deep in the pelvis. I guess I should be flattered that I have such a noteworthy tumor as indicated by their opening statement:

Desmoid tumors are among the rarest of tumors—they occur in only 2–4 people per million per year in the United States.

2-4 people PER MILLION PER YEAR?  Maybe I should go buy a lottery ticket.

I have also requested an appointment with them via their online system so will have to wait to hear back from them.

BTW, how do such young children as mine unerringly know to come over and start haranguing me in the loudest possible voices every single time I'm on the phone?? They can be playing nicely, quietly, completely ignoring me but let me start talking on the phone and taking copious notes...oh, it's just not pretty. 

My next obstacle is to make sure I have childcare for all those appointments...ugh. Marissa is great so far but can only work mornings as she has another family every afternoon. Three of my appointments fall in the afternoon as the docs prefer to make consultations the last appointment of the day in order not to rush which is great in theory...

And to put another snag into life, Len will be working in CA for three days during one of those afternoon appointments. Yay me. 

Does stress cause/exacerbate cancer? I believe it does.

A VERY Happy Mother's Day

We have had a wonderful mother's day here! My first with both girls at home with us!

Lucy gave us the gift of a 6am wake up call (as opposed to the 5:30am we are used to). This worked out better as we also had our first date night since last July, on Saturday night. Marissa came over in the evening to help feed the girls some supper and then go through the bathtime/bedtime routine. We got the girls down with only minimal fuss by 7pm and we were out the door by 8pm. We headed downtown for a delicious meal at Le Colonial.

 Driving on Lake Shore Drive without children in the backseat!

 

 We settled in with martinis before ordering a really fabulous meal.

It was a much-needed break to our very stressful April/May...the first chance we've really had to sit and talk to each other.

Today we were up and out the door by 8:30am in order to get to the Shedd Aquarium as they opened at 9am. We met up with Sara, Gustav and Lina which thrilled the girls. For the most part, I'm going to let the pictures do most of the rest of the talking for this post.

 

 We all fall down!!!

 Enormous spider crab!

 

 Waiting for the beluga whale and dolphin show to begin.

 

 The jellyfish exhibit was amazing but smaller than I thought it would be based on the adverts.

 

 Lucy is once again fascinated by hair that is different from hers...

 

 An egg yolk jellyfish

 

 

 

 

 

 

 

 

 

 Heading to the next exhibit!

 

 

 

Watching the beluga whales from under the stage.

 Sliding down the penguin chute!

 

They were both sound asleep before we got on Lake Shore Drive.

Tonight we read Goodnight Chicago! and got to talk about all the stuff we had seen from the book that day. A perfect day.