Music Monday: Disco Fever

I think once you have real life experience with cancer, every mention of cancer draws you up short. In the 90s, when I was an active sex educator and a vocal advocate for HIV prevention, we always made it clear that people discriminate -- HIV does not.

Cancer is the same. It does not discriminate. It comes in many forms. It will gladly change the life of a 4 year old or an 84 year old. Cancer is a tricky deal. It can play hide and seek with you... and once you have stared in the face... you are always looking over your shoulder...

My maternal grandfather died of lung cancer which had spread to the esophagus. My maternal grandmother died of non-Hodgkin's lymphoma. My mother... thyroid cancer.

It made me pause that in a matter of weeks-- Donna Summer, Robin Gibb and Adam Yauch of the Beastie Boys. All young and all dead too soon. Cancer is relentless and the world is the poorer for it.

This week I am posting a favorite song from each of these great and not greatly to be missed performers.

Donna Summers --- Last Dance

Bee Gees --- Tragedy

Beastie Boys --- Sabotage 

What Can I Do...

I haven't written about my mother's battle with cancer for some time. I kept starting and then I would stop, then start and then stop. Two weeks ago, I started and stopped.

Today I decided I should finish, only I can't. If you are a Tweep or a Facebook Friend you know that last week my mother lost her battle with thyroid cancer. It was a long and very brave battle!

When L was 5 months old, mom had her thyroid removed and underwent radioactive iodine treatment. Twice.

We thought that was it. Hormone replacement for life and all was well.

Until she underwent pre-op testing for a cervical corpectomy about 5 years ago and a routine chest x-ray turned up some strange spots. A PET scan, an MRI and a lung biospy,  and countless doctor visits later we knew... thyroid cancer... again.

After specialized radio-iodine failed to achieve the results we hoped for, we were out of options. Mom had always said she wouldn't do a clinical trial. She had seen patients who had been subjected to all sorts of experimental drugs. A good friend had participated in a few studies for breast cancer and had cautioned mom on the trials of a clinical trial. She had always said she wouldn't be a lab rat. It just wasn't what she wanted.

My mother changed her mind.

I know what or rather who swayed her. She was a 2 years old blondie with screaming blue eyes and she ran over to us in the waiting room at the super Endo's office one morning and squatted down, covered her eyes, and yelled "peek a boo!" and then burst into a riot of giggles. Her mother came over to collect her, a healing surgery scar and a worn out look in her eyes.

In that moment, I knew my mother was going to try the experimental chemo. People don't go see the super Endo, when their cancer is under-control. My mom was seeing visions of that happy little girl growing up without her mama. Mom was also very worried about L and I... and my brother - altho thyroid cancer affects men less frequently -  in fact she was worried about us in the last days of her life. Some thyroid cancers are genetic. I already have autoimmune issues and while L is still young, mom worried.

The chemo was tough, but it worked for awhile. The side effects became too much and the effectiveness questionable.

The cancer had won. We all knew it and we set about enjoying the last weeks and months. The end came sooner than we expected. We knew we were driving down a tunnel with no light at the end, but neither my brother or I knew how close to impact we were.

So now we are sitting quietly, thinking, assessing and figuring out how one goes on.

I have to say my friends and loved ones - my family - has been amazing. We have been well loved, well fed, we are basking in all the energy people have sent our way.

That said - I do want something. I have an answer to the question - "Is there anything I can do?" Today during YOGA it came to me - this is what everyone can do for me.  Learn about your thyroid. Learn about the signs of thyroid cancer. Don't ignore feelings of fatigue, a persistent sore throat, sudden weight changes and changes to your skin and hair.

If you feel off - see your doctor. Ask about a thyroid check. There is no way to know what the outcome would have been had my mother not taken the "oh it is early menopause" as an explanation early on...

So that is what you can all do... promise me you will take care of your thyroids. Women are more likely to develop thyroid cancer but it does occur in men. In fact the men in the clinical trial were showing wonderful results on the study drug... the women, not as much.

Sure we all burn the candle at both ends sometimes. Sometimes we drink too much, sleep too little, say "NO" too infrequently - but being tired is very different than feeling fatigued or so exhausted you can't move.

The down side of all of this is some problems with the thyroid are largely asymptomatic. So next time you have a physical, visit your doctor, or have blood work done, ask your doctor to tack on a thyroid panel. It can't hurt.

At least have the conversation - because that is what you all can do for me!

This and That for the New Year

Yep I know I have not been around much. Been busy, you know, so here is a bit of a random update for those of you who might or might not be curious.

Christmas Cards.

Right I know you got none. No it was not a mailing error. I decided, it is silly to send all these cards. It is a costly and time consuming task. It is not that I do not care about you. I just had so little time this year and postage is seriously expensive. Seriously.

I was torn, make no mistake. I do like writing cards. So I decided, I was not going to be a lemming, but rather, more proactive about writing random cards through out the year and less inclined to add to the Christmas madness.

MBA School

I have officially 4 weeks and 6 days left. Do I have senioritis. Hell yes I do. I just want to be done. February 8th, I am a free lady. I will have completed my masters degree. Now seeing as I officially started this process before L was born, it has literally taken years, but I am done. UOP is an efficient way to go.

I am thinking of trying to teach once I am done. It would be a good fit for my life and I think it suits me.

Speaking of working...

I am now working at Indie House Collective on Wednesdays and hopefully expanding that to Fridays once school is over. I like the energy there. I like the creative buzz and I find I am very productive. No piles of laundry. It is not home. While I do love my home office, I am sitting in it now, I also find real value not working at home. There is a balance to the process of going to work.

Upset Tummy Troubles

As many people who follow the blog know, I have really struggled with my gut for much of the year. After an agonizing glutening in April of 2009, I have struggled mightily to get back to center. My weight has been crazy weird and the gluten caused me jump nearly a dress size, even thought he scale hardly budged. Then the scale budged and I languished. On top of that - I just felt genuinely bad.

In the last 6 weeks, my weight and frankly my hormones I think, have shifted. I have lost about 6 pounds. Rapidly. My blood pressure has bottomed out a bit off and on and I have been really trying to find that gut balance point. While the weight loss is welcomed, the other issues have been a challenge. I mean a challenge.

We might be there. I am now back at my normal weight and the waist band of my pants reflect that. This is a recent development. I have to be the only person in America to lose 4 plus pounds the week of Xmas and New Years. Without even trying. I will even admit to splurging on some chocolate...

I also have moved forward with new doctor and had a serious amount of blood drawn, in order to under go some testing, in an effort to pinpoint exactly what is the trouble with my gut. Let's hope 2010 is about putting the gut issue to bed for good.

Subtraction

So for those of you, who are math challenged and childless - be happy. Be very happy. L is learning double digit subtraction with regrouping. (Like 41-29)

Now let's just say that there is no memorizing jack. It is an intuitive approach and they teach the kiddos like 7 different ways to look at adding and subtracting - then they throw the regrouping idea at them. Seriously. Then they wonder why the kiddos are confused.

I am really decent at math. I have been working extra with her. We are slowly getting there. Between this and them wanting her to finish the 2nd grade reading at least the 4th grade level, I actually wonder exactly what 3rd grade has in store for us.

Cancer Live

Mom is in a 2nd Level Chemo trial at the James. So far so good, but I have to say, they expect alot out of a woman, with cancer. Lots of appointments and running around. The side effects are manageable, but my bro and I are circling the wagons. It is very exhausting. She is in amazing hands, but it is still a long road...

Snickers

Our cat is fab. She loves us and we love her. The kids are still, 3 months in, being very responsible about her care and she has mastered the cat door. I still am convinced it was fate. She was sent to us for a reason.

This blog

I am not sure if I will continue blogging here or not. I find I have less and less time and my creative energy has been taking me in different directions of late. Needless to say, I do not want this blog to be stale and only updated once in a while. That said, nor do I want it to be filled with mindless drivel.

I am unresolved on this point. How much is enough for it to remain relevant? Useful. To what end is it.

So we shall see. I am thinking it over and will get back to ya'all!

Open Letter to CEO of Mt. Carmel CEO

This is: Claus Von Zychlin
President and CEO
Mount Carmel Health System

And this open letter is for him!

Dear Mr. Von Zychlin:

I want to bring some issues regarding my mother and her health care to your attention. According to your website you preside over:

the second-largest health care system in central Ohio. Our more than 8,000 employees and 1,500 physicians utilize state-of-the-art facilities, advanced technologies and the latest procedures to accomplish our mission of healing patients’ minds, bodies and spirits, and improving the health of the communities we serve.

I would like to point out that the 8000 employees you have are receiving substandard service and care from your Health Plan. I am going to tell you a story.

My mother has thyroid cancer. A rare form of thyroid cancer. One that has caused us to exhaust normal avenues, avenues within your system. Two very well respected doctors in YOUR SYSTEM agreed that she would need to seek care out of network. Here begins the issues. If we could get proper care in your system we would, trust me, we are not really having a good time struggling thru this minefield.

Aetna, your chosen provider, to act as administrator of your own self insured insurance plan in my opinion offers substandard customer service - to both the participants and the provider.

From the time of the 1st referral, almost 18 months ago up to and including yesterday visit to our Thyroid cancer specialist at OSU/The James, we have been treated shabbily and it has been a circus of phone calls upon phone calls, upon faxes and I wish the issues ended there.

The referring physician should not have to make multiple phone calls and be subjected to hurdle after hurdle. Sadly this has been our experience, the reps on the phone either cannot or will not listen and are unable (a training issue I believe) to think critically and ask appropriate questions. Under normal circumstance a specialist would not refer to another specialist - but this is not a normal circumstance. The reps need to be trained for both.

Furthermore, we should not have to start this process from ground zero each and every time we request a renewal, the referring physician should have a single point of contact to call. Someone trained to speak with highly trained and specialized physicians. Your providers deserve that and your employees also. As a client of Aetna - you should be demanding the highest level of service for your employees and your Medical providers.

In addition, we had approval to go to the hospital for some high level radiation and at the 11th hours something went wrong - there was a miscommunication. The reps at Aetna had not crossed their t's and that of course became our problem, which we had to involve two physicians and we almost had to scuttle this treatment due to YOUR insurances plan lack of attention to detail. That was embarrassing, my mother works for the 2nd largest hospital system in the city and their insurance plan is administratively substandard.

Whilst speaking of substandard let's explore your lab and film rooms inability to follow direct physician orders. Orders written in bold print on the form or prescription notice. As part of Aetna's approval for out of network treatment, we have to have all CAT scans and MRIs and Lab work addressed within your system. Which we understand, is a significant cost savings. It makes wonderful fiscal sense. IF YOUR SYSTEM COULD HANDLE FOLLOW THROUGH! The orders clearly state that the results are to be faxed to the physician ORDERING the test at OSU. Those labs and scans are useless unless they make it to the physician requesting them.

After a 6 week fight to get the approval to see the doctor yesterday, we get there and yep - no labs results and no scans and no notes from the radiologist who read the films. Are you kidding me? So we waited an additional 1 hour, while his staff tried to track them down at Mt. Carmel. How embarrassing. The lack of attention to detail is astounding. How can your labs and other departments be trusted to see to in-patient care when they are this sloppy with my mother's care?

I had both of my babies at your St. Ann's location. Going forward, I plan to seek care elsewhere. Your hospitals in ability to follow simply instructions is questionable. Your health plan is not customer/associate friendly.

I will say we involved KS in benefits and she did get a process outlined for us - for the doctor to use every time we need to get approval. I am not convinced that this is not going make the process smoother, I am not convinced that this is not going to once again be a pain, more stress than my mother needs. My mother is trying to be a committed employee and stay as healthy as possible.

Before you write this letter off as being from some writer who likes to read her own writing, I will point out I am 1/2 way thru my MBA and I spent almost 10 years at a large financial services company. I have sold benefit plans - I understand how the ins and outs work. I know that you are not getting what you pay for OR PERHAPS you are. Perhaps it is your hope, as a method of cost savings, that if you make this process SO INCONVENIENT that employees will just stop the process. The problem in OUR case - it would mean a death sentence for my mother.

I know medical insurance is expensive for both the employee and the employer. Containing costs is important - HOWEVER as a medical company - shame on you for potentially trying to cut costs at the price of your employees' health and mental well being - the same employees entrusted with caring for the community. The hypocrisy is appalling and I am writing this letter to make you aware. It is my hope that you take a role of leadership and DO SOMETHING TO MAKE IT BETTER for the very people who represent you day after day, shift after shift.

I welcome dialogue on at THOUGHT'S FROM THE EDGE, feel free to contact via this blog.

All the Best!

Cancer Live Update

Yesterday was a great day - unless you were the well documented tumors in my mother's lungs. The day glow cocktail my Mom imbibed in February did its job! There are no new tumors and the existing ones are smaller or the same! Awesome!

The grand poopba is pleased. He praised our efforts with the Low Iodine Diet. Yeah!

So the next steps are monitor those tumors, so Mom will have blood work and an MRI and a CAT Scan. We head back to see the poopba around Halloween. The Day-Glo cocktail is still working and will continue to for a few months. He wants us to wait and we will take it as it comes.

The hope all along was/is that the Radio Iodine (Day-Glo cocktail) would do exactly what it has done. Then we continue monitering, until her bloodwork or scans indicate that the tumors are growing or new ones have cropped up!

So in October we will know - was the lull in growth - a short or possibly long term accomplishment. If/When those bad boy start growing again - then we would consider clinical trials and chemo... the chemo is a rough deal and right now - mom is working, feeling ok and if the tumors will just hang and not grow - then chemo offers - experimental chemo does not have much to offer in terms of net gain.

So all around - a great outcome.

Cancer Live - on speed dial!

So my mom is feeling pretty good. She has been off work, while letting the glow fade and she has been taking care of business and resting. She head back to work on Monday and is planning to take it slow and maybe work a few 6 hour days to get back into the swing of things.

This past week she and I have cleaned some at her place, run some errands and had some meetings.

On Thrusday as we drove to L's school, for lunch, in the school cafeteria, I asked Mom if she had heard from the "Grand Pooh-bah!" and she said she had not! Which just stymied me. They pumped her full of arguable poisonous amounts of a dangerous radioactive substance and then send her home and NO ONE calls? I mean really!

So as we pull into the drive thru to get her a hamburger and L some chicken nuggets - her cell goes off.

Who is it you ask? The Pope? No he was sleeping is my guess... No it is the Grand Pooh-bah! One of the only thyroid cancer specialist in the US - is calling my Mom's cell personally! Woot!

And the icing on the cake? He had good news. There was significant uptake on the scan - so the low/no idoine diet that we worked so hard on - worked. Her body was depleted enough of iodine that those pesky tumors sucked up the Radioactive Iodine with a straw! Awesome.

She has to have another CAT scan in a month and then she sees the Grand Pooh-Bah in May!

It was good news. We are lucky to live in a city with a wonderful cancer center and as a Team - my mom, H, my bro and I are banding together to kick Cancer in the butt! One day at a time, one challenge at a time, and one step at a time!

Cancer Live Update!

Mom is at home and resting and being restless... She is getting back on her meds and that is a rough ride and she is still tired but bored and restless. I thought she might sleep a bit more but I think the 44 oz Diet Pepsi my brother got her - post treatment and post special diet - hyped her up but good.

She returns to the James Thursday - for follow up and another full body scan. My brother is handling that trip. Then she will be meeting with the grand Po-Ba again at some point to establish a next course of action.

Next week she has me lined up to run errands and tackle the remaining boxes from her move. A little Spring Cleaning!

I am really happy with how well it has all gone really. Better than expected - now we just wait and hope the RAI does its job!

Cancer Live - Again!

So this morning it was a repeat of Monday. Up at 5 am to my mom's around 6:30 am and on road. Parking at the valet and then to admitting. That process went smooth as could be and then we waited and watched The Early Show. Eventually her room was ready. It is all decked out in Hazmat Plastic. The room itself is lead lined to keep the radiation in and everyone else protected.

I mean everything is covered in plastic. Even the shower and the toilet.

We waited and then a PCA and nurse came and went. We had a visit from the Radiation Protection Officer and then eventually they came and took us to the area where they would conduct her full body scan.

I waited until they took her back and now I am out. I cannot see her for at least a week. After the scan she will go back to the room and then she will have to drink a to be determined amount of radioactive iodine based on the scan today. (and some other factors I think.)

Then she sleeps and waits until she is less hot and can go home. To be in isolation there.

I plan to call and check on her tonight - but if it is anything like last time (2003) she will like be asleep until they send her home.

I have been updating my facebook with my comings and goings and PDA - our friend in Germany commented today that his parents would be at the James today at noon - and sure enough as I walked out to my car - I saw them. Small world.

Cancer Live!

So today I was up at the crack of dawn (5 am) and picked my mom up around 6:20 am and headed down to the James. May I say valet parking rocks there! May I also say that I am not sure the Ritz could have done a better job that early in the morning? Everyone was helpful, guided us where we needed to go. All before most people have had their first cup of coffee.

Registration, check. Visit to vampire, check. Tracer dose of I-131, check. Wait an hour... get scanned, check. Back at mother's having tea, check.

And guess what? We get to do it again - same time - on Wednesday. Only on Wednesday, I will leave her there and she will have to stay for 2 to 3 days and then she has to be in isolation at home - for 7 days.

That is the hard part, as I will not be able to see her then - since the kiddos can be impacted by the radioactive fall out. So if she needs something - I can drop it on the porch but cannot go in.

So it is onward and upward... I think I need a nap...

Camo

So today I engaged in a bit of recon. I set out to visit the Hospital where mom is going to have her treatment next week. I had the google map, the map provided by the hospital and the directions. I drove my route, timed it, parked in a garage and set out to walk the course and check the place out.

We will be at the James - on the OSU Campus. I avoid campus like the plague. I did not go to school there and frankly it is a scary place to be in your car by my estimation. But Mom has to be at the hospital both times way way early in the morning and she is seriously exhausted being hypo thyroid and all. I thought it better to have a solid game plan and so recon today seemed a good idea.

I wanted to know what I was going up against and make sure that we were not lost wandering around campus in the dark on Monday morning!

I am so glad I did. The maps - kinda inaccurate. The place I parked - way far away from where we needed to be. So I asked for some assistance, and got some really good answers and I have a plan for Monday... I revised my map and I now know exactly what I am going to be doing. Valet parking is the key and I plan to go that route. If not I have scoped out a back up parking garage.

After the recon mission - I had coffee and lunch with a friend :) Who works nearly on top of the hospital.

So hopefully now, the entire process will go smoothly - at least the getting there part!

Cooking on the edge!

Well perhaps I have discovered a new calling! Perhaps I could go into special dietary needs catering. Mom says everything tastes good and that her co workers have all said everything smells great!

She has eaten a fair amount of what I made, so I am going for round 3 tomorrow - to see her thru the next week.

The 16th - her 61st B-day is her prelim appointment and then on the 18th she will be in patient getting the big dose of Radioactive Iodine!

Right now she is exhausted - having been off her meds for 10 days and having absolutely no thyroid hormone at all. Just exhausted and cold...

So we are going for more mini meatloaves and more lemon chicken! And some more applesauce muffins!

Also this week, I plan to do a trial run driving to the James to scout parking - since we have to arrive at the crack of dawn both days....

Food Panic

I was talking to my mom yesterday. She started the Iodine Free or Low Iodine diet on Sunday. I was checking to see how she was doing. She is doing well. She and my bro cooked some over the weekend - so she had some additional choices. She was surprised that things tasted ok without salt and I dropped her off the Kosher Salt I had bought yesterday. She did without salt as a seasoning on Sunday and part of yesterday.

I have talked about it before - but she said she could totally relate to it now. Food panic. I get this every so often when I think about venturing out to a place I have never been before or before I travel.

Let's face it. I can eat next to nothing processed and my meals require much planning. I always travel with my own food - but it is a challenge and going somewhere new sends me into fits occasionally. I mean we rented an ridiculously large beach house this fall- because I had a very real fear(or near moment of panic) of being trapped in a hotel room with no kitchen and no way to cook for myself for seven days. I like Lara Bars - but seriously how many can you eat in a week and not go crazy. Same goes for bananas and apples with peanut butter. Trust me there was not Whole Foods or similar for hours...

While I loved our trip to NYC - I will admit to being very hungry when we got home. Very hungry. Because I was eating very little that trip. Fruits, veggies, and boiled eggs and then the Gluten Free snacks I had packed myself. That was it. Some potato chips for crunch... While we ate well on Friday - the rest of the trip was more snacks for me.

So yesterday she said she totally got a taste of that panic. She was afraid what she had brought to work might not be enough and she had that moment of panic of what could she do about that. It is a frantic feeling. But it passes.

In some ways I think discovering this issue I have - and going gluten free as an adult is easier. I am an adult and I have zero desire to cheat. But I also long for things I used to eat and now cannot. Had I been this way my entire life, I think it might not be such a big deal. Although peer pressure as a kid might have been tough. The desire to not be the kid with the freaky food issues. (Who am I kidding - I had freaky food issues as a kid - just had no idea what the cause was and therefore I felt even more freaky!)

But the feeling of food panic is real. It is a fact of life. I look at food very differently than most people. There is not much pleasure in food anymore. It is a means to an end. It is a central focus of my life - but not because I like it or find great pleasure in eating... it is a source of fear sometimes and other times it is just something I have to plan for and around. There is no spontaneity in my eating habits.

I know others feel this way. Anyone with food allergies will tell you - that you must always been thinking. There is no mindlessly eating to fill the time or just tasting something that looks good. There just isn't.

Low Iodine cooking update...

So I have 4 servings of yummy homemade chicken noodle soup completed. (Well first - I made 2.5 quarts of my own chicken stock to use in the low iodine recipes.) And I have three single serve chicken potpies made. They are very cute and I have to say making the pastry shell with corn oil shortening is harder than butter and I have no idea how it will turn out - I will say - they look nice and the chicken mixture looks yumm-o. Not that I can taste any of this - seeing as none of it is gluten free.

Did I mention finding unsalted frozen mixed veggies is almost as hard as finding the HOPE diamond in a garbage dump? But I found some! I ready every label in Giant Eagles Frozen veggie section and have the frost bite on my fingers to prove it!

Next on the parade of fab low iodine food - corn muffins and apple sauce muffins!

Take that you pesky tumors!

Let them eat fruits and veggies...

Yeah that and meat and basmati rice. I cannot eat about 90% of the food found in the grocery store. People ask me what I like to eat... well frankly there is so little for me to pick from I like almost all of it. Beets and Turnips I refuse to eat. Ugh! I am also not a fan of potatoes so much. Certainly not baked or mashed or boiled. Roasted I can handle and damn I love me some French Fries.

But today I found - well an even more restrictive and complicated set of dietary restrictions. My mother prior to her big mega does of Radioactive Iodine, has to go on a Low-Iodine Diet. Everything except for salt free herbs and spices, fresh (no frozen) meats, fresh fruit and veggies. Some grains and unsalted unroasted nuts. No baked goods - but you can make your own bread if you are so motivated - but can only use certain yeasts and no salt and only certain additives.

Ok this is a nightmare for the obvious reasons but also for the following!

A) Mom has to go off her med - her thyroid hormone replacement med. She will be a walking zombie! No energy. She also has to somehow work because she does not have that much time and she needs to conserve it for the Chemo portion of this fun odyssey. Couple that with the fact that my mother has next to no appetite at all.

B) My mom is a huge fan at this point in her life frozen meals. She comes home from work and nukes and then is done.


So today my bro and I divided up the tasks and he is going to do the every other day salad and fresh veggie prep! It is only a little over 2 weeks that she has to go this route! I am going to make her a series of "frozen dinners" which she can nuke when she gets home and that she can take to work with her. Also with dairy and eggs totally out - she is short short short of breakfast ideas - so I am going to make some great morning muffins for her.

The recipes which came in her packet are easy and seem like they would taste good.

I mean I am good at reading labels - but this diet almost seems impossible. I swear with this endeavor and my normal hyper vigilant food label inspections - I am so going to need reading glasses.

But this is her last shot at Radioactive Iodine Treatment - with this she will be at her lifetime exposure mark and we all want this to be as successful as possible. The better this works - the better chance we have for the Chemo to do something meaningful...

The Universe Smilied

So yesterday was the first day in a long long time that I worked almost all day. Well from 10-2:30 pm on my business. This had been the plan when we put E in preschool all day, but alas this entire summer, something else happened on either Tuesday or Thursday. I am not really looking for an entire 8 hours - I will take 5 or 6 hours of uninterrupted work time.

I also took some time to work on some personal admin items and this included poking around for better accommodations whilst on vacation, which is 3 weeks away.

We are heading on vacation with my mother on the emphatic advice of both her doctors. We are going to Jekyll Island which is an island off the coast of Georgia, roughly the size of the Short North. Given the late nature of our planning we had secured two very small rooms at the Days Inn.

Now there are a number of problems with this. No kitchen and given my food issues, I cannot just eat anything. I have been obsessing over this for weeks. Size. Two small children stuck in a small hotel room - sounds more like hell than vacation. Noise - there is a large convention there that week and the Days Inn, we stayed at before and well noise was a serious problem.

So I have been meaning to call the two Island rental agencies to see about a condo or cottage, but well I have not had the time or I have had the time and they are closed for the day.

I called yesterday. The first one had nothing. I mean nothing. My heart sank a bit.

I called the second one.

They had one. Not just one. One of the nicest houses on the island. It is on the beach. It has exactly what need - including a kitchen and WiFi (ok I do not need WiFi - but I sure as hell like the fact that I have it....) it has 5 bedrooms (way too many but I will take too many over not enough.)

It is a bit pricey, but if what the doctors say is true - this may be one of the last vacations we can all take together. I want it to be full of happy memories and happy times and I want it to peaceful and rejuvenating. It has been a long summer for my mother. She has moved, she has been told that the cancer everyone in the beginning thought was no BIG DEAL. Is in fact a HUGE DEAL.

My best friends J's dad died yesterday. Her mother died a few years ago - Life is really short. I mean really short. When great moments come along - Live them, becasue once they pass you by - they are gone forever.

We took the house. I am excited for the kids to have space to roam. The adults to have space to be and think and rest. Ocean view and ocean noise.

I am sure there will be tense moments - there always are when little people and big people get out of their element - but I feel way better about have room for tense to diffuse!

I am so thankful for having the time to call at the RIGHT time and finding what I want wanted. Feels like someone was looking out for me!

Hopeful realism

We had no trouble finding the doctors office and we got checked in, went to wait and they took us right away. Answered like a million questions from the nurse and then saw Dr. Rand his research fellow Dr. G. We spoke with him for a long time. (like over an hour...)

He took a history and then looked at film, took the CDroms - and was going to get her OR slides and all that jazz.

We have three basic choices and he views his role as educated adviser. He can offer his opinion and guidance but mom is in the drivers seat. Only she can say what she is willing and able to endure.

The bottom line is the conventional treatment is not working. Her scans indicate that there is uptake of the Radiative Iodine - but that it is not having its intended effect. It should shrink or stop the tumor from growing. So it is absorbing the chemical - but the chemical is not having the intending consequence. The tumor is also taking up the glucose or sugar injected during the PET scan - which means the tumor is active and growing. Not a good sign. The Iodine should stop or slow the metabolic activity at the cellular level.

So we have three basic choices. We can do nothing (this one is hands down not recommended because the other two have a reasonable good success rate.)

Option A - Do an inpatient and concentrated dose of radioactive iodine. They can target the tumors metabolically better. This has some major possible side effects and could damage her bone marrow or lungs. There are ways to mitigate those side affects but they also limit the effectiveness of the treatment. This is the general next step - but since Mom has already had a reasonably large dose of Radioactive Iodine, his feeling is we may want to save this until we really need it - and since it has been marginally ineffective before is it really the next step? He will know more once he has a chance to really study her file.

Option B - Test out and enter a trail of some Chemo - in pill form. They have some great new stuff on the market and just shy of coming to market drugs - which are exciting and seem to be effective - many of them have been approved for Kidney cancer but seem to have the same desired effected or at least desirable effect in thyroid cancer. The general feeling is these will slow the growth of the tumors for a unspecified period of time - then for reasons not yet known, somehow the tumor mutates and the treatment ceases to work. This tends to happen quickly.

The bonus is she does have a form of thyroid cancer(follicular) which is treatable. There is an extremely aggressive form - to which there is very little to be done. So while there is a form of thyroid cancer which moves like a speeding bullet train - Mom's is more like honey on a a fall day, slow moving.

He did explain that while there are treatments there is no cure. That we have made it him means we have past the point of cure. That it has spread post thyriodectomy means we are seeking an extension of quality and quantity of life. For many patients it can be 5-10-15 years before the treatment ceases to be effective. In others less than 5. In some cases even more than that. Each year brings new advances and new treatments. That is hard to hear - but then he says the interesting thing about thyroid cancer - more than just about any other one - is that for every patient it is different.

So he is going to get with his team and review her films and history - take a look at the blood work and then we can get back together again!

She has a rare disease and and happens to live in a city with one of the only research centers for it. That is a blessing. While there is no magic bullet - it is nice to know that her disease can be studied and her experiences can lead them to new discoveries.

Overall I am impressed with his knowledge and his willingness to be candid and frank. He is clearly smart and I think the chain yanking and teeth pulling was so worth it to get into see him. He is out of network for Mom's insurance and it was a circus getting approval for this office visit.

Mom will be with us for a while I think and I know she is motivated within reason to keep on keeping on! It is a blessing that she will be moving closer - so that we can spend the time together. I also think if I can help her with the small stuff she can manage.

Overall it was a positive day - but I am very tired nonetheless. It is draining trying to keep up with the medical speak and the office hopping. Mom was tired too.

So that was us as we left the hospital complex. Hopeful, realistic and tired!

It is still here....

You know you have been blogging for awhile, when you forget if you have covered a topic already or not and frankly I am not going back thru all my blogs to see if I have or not.

My mother was diagnosed with thyroid cancer when L was a newborn. She had a thryiodectomy and then a 2 courses of radioactive iodine (which makes her glow in the dark - well not really but she is radioactive for a bit of time.) Then she went on synthetic thyroid hormone maintenance meds and that is supposed to be it.

Two years ago before she had surgery to correct some deterioration of her 4th and 5th cervical vertebrae, the pre op x-rays detected some spots in her lungs. Then came the MRI and then the PET scan.After she recovered from the surgery - she once again did some radioactive iodine. (After many many tests and lengthy doctor visits and some turf waring....)

Well the day glow cocktail did not work - and we are faced with not only did it not kill off the tissues first discovered - yeah well there is more, which has come to join the party. This is not the news we were hoping for in the least. The cancer cells are in the area of the body where the wind pipe splits and the bronchial tubes branch off into the lungs. Surgery is not an option and it is not the best place to have extra tissue and cells laying around - clogging up the works.

So we are off to a super specialist at OSU Medical Center. The correct direction is forward but sometimes I just want to throw things at who ever thinks this is a good idea. I happen to think my mother has been thru enough and has control of her blood pressure and her diabetes and is entitled to some peace and quiet as she nears retirement. She is entitled to relaxing with her grandbabies.

But we all know life is not fair! Not in the least and the challenges presented to us can be met with a panic attack or with grace! I am praying for grace! It is baby steps and the next big step is figuring out where to park at OSU when we go see the specialist!