Saturday, March 29, 2008

Ella's Excellent Adventure


I have to give credit where credit is due. Those PR and Advertising folks who come up with the commercials for Orlando, Florida know exactly who their target audience is and exactly how to reel them in. I'm guessing that's how we encountered our latest adventure in parenting.

Ella decided earlier this week that she needed to go see "the castle." She says this every time she watches "Enchanted", or sees a Disney commercial, or the opening graphics of ANY Disney movie, because yes they show a castle. So Troy and I explained to her that there was a real "Cinderella castle" and someday, maybe we'd go see it. (Mistake #1)

Then she saw the Orlando tourism commercial with the castle and beaches, etc... and decided "Ella needs to go beach." We explained that she's actually been to the beach, when we went to Florida for Troy's brother Nick's funeral. We even pulled out the picture and showed her playing in the sand, eating sand, picking up shells, wading in the water, etc... (Mistake #2)

She decided she wanted to go back to the beach Wednesday night, and she wanted to get there now. It took us awhile to explain that the beach is a long way from Ella's house. We can't get there in just one day, it's far away like Grandma and Grandpa Robinson's house in Florida, and we have to fly in an airplane to get there. (Mistake #3)

We've tried to explain that we need to buy tickets, but Ella insists the Hello Kitty paper she has will work just as well. We've told her that we need to make plans to take a trip like this. She's not buying it.

Our original plan has been to stick close to home for a few years, until we can all travel a little more easily, and Alex can walk and enjoy the activities too. But life is short, and my health scare has us talking about things we'd like to do, while we have a chance. There are pluses and minuses either way. So we'll consider and reconsider. In the meantime, Ella may forget about this and move onto something new. Maybe she'll want to visit the North Pole next week?!

Thursday, March 27, 2008

Who knows?

A little further research reveals that bone tumors are sometimes referred to as "bone bumps." So we still don't know what we're dealing with at this point. Could be a tumor, or not. We probably won't find out until we talk to the doctor next week. And even then, who knows. Not a lot of answers lately, just more questions.

What information we can find leads us to think that his could mean the Gamma Knife would NOT be an option. I'd have to have an actual craniotomy if surgery is needed. That's scary. But I'm not panicking until we learn more. Much more to come after our appointment on April 2nd.

Also learned that the NIH has a 2nd opinion program for brain tumors, which is FREE, thanks to Federal Government cancer funding, and the NeuroRadiology Department at Johns Hopkins offers second opinions. I'm still waiting to hear a price range on that. At least we could get a few top in the field folks to weigh in on all this, and help us decide who knows what they're talking about. Before we let anyone shave my head and cut into my brain! Yikes! More to come...

Monday, March 24, 2008

It's NOT a tumor...

Depending on who you ask. We were anxiously waiting today, knowing that the Midwest Gamma Knife Conference was considering my case as a possible candidate for gamma knife radiosurgery. I didn't really expect to hear anything back immediately. I've already scheduled an appointment with one of their neurosurgeons for next week. But this conference is a weekly meeting of all the directors for this Center. They include a neurosurgeon, neuro-radiologist, neuro-oncologist, etc...

I got a call about an hour after the conference today. The coordinator says they don't think either of the two areas of contrast which show up on my MRI are meningiomas. In fact, she says those were the first words out of the neuro-radiologist's mouth. He says they're not meningiomas, they're "bone bumps." She said the doctor next week can explain much more thoroughly, but that they can see bone marrow in the growth, so they determined they are abnormalities in the skull and not invasive tissue.

I think that's good news. Because to me, non-invasive means they won't expand and compress brain tissue, which is the main concern of meningioma. I might not need surgery or any intervention whatsoever.

BUT, there's always that magical, mystical word to throw into the equation. Why is this the first time we've heard this:? Why didn't the first radiologist who read the MRI and provided a report see the bone marrow? Why didn't either of the 2 neurologists that we've seen or the 1st neurosurgeon indicate this? My thought is that most doctors don't really understand the MRI films themselves. They just look at what the radiologist puts in the report and it's "okay, I see that white blob on screen B6, makes sense to me."

I'm hopeful that this neuro-radiologist is a specialist, trained to look at films of the brain and that because he viewed my MRI films in this conference setting with a handful of other doctors, they were able to discuss and concur on what they saw on my films. We plan to discuss this at length with the 2nd neurosurgeon at the appointment next week. We're hoping we can convince him to order a second MRI immediately, and let another neuro-radiologist take a look to get us a concurring opinion. That would be a first! Doctors with the same ideas, thoughts and opinions on my brain!

Until then, we're just keeping our minds open and hoping for the best information.

Sunday, March 23, 2008

Lip gloss reprieve

Troy decided to go against his better judgement and order a new tube of the $20 lip gloss I so loved and blamed him for losing.

He says "on principal, it's not my fault" but his experience as my husband got the best of him.

He realized he could stand on his "principal" or avoid the nagging for weeks maybe months to come.

He opted for the latter, and my tube of "RaZZ my Berry" arrived Friday. Love it even more the second time around.

And for the record, I was sedated. I still think it was his fault. But you're forgiven baby!

A little help from my friends, and my job.

I always knew God had a plan. I rarely know or understand that plan, but that's why we call it faith. So when I decided to leave TV and enjoy my family, I had no idea my new position would be such a great fit, and so important to my life choices down the road.

I know I've blogged about this before, but it's never been more important than it is to me now. Since we learned of my brain tumors, I can't even express how grateful I am for every single moment with my children. Even when they're screaming or snotty, or smearing blackberries all over my kitchen. I treasure my time with them.

We're over the initial shock of the "brain tumors" diagnosis. I've started to come to grips with the fact I'm not going to die tomorrow, unless I'm hit by a bus or something. The tumors are not likely to kill me. But, there is always that underlying thought of my mortality. It truly makes me realize that leaving TV is never going to be a decision I regret. Having this quality time with my children, being here for all the "firsts" is irreplaceable. So thanks #1 is for the flexibility my job allows to spend the time I need with my family.

Thanks #2 is for the fact that I work with an amazing staff of professionals. I can literally call up a co-worker and ask "Who do you know at Mayo? I need to see a neurosurgeon." and in minutes I have names of the very best. That's reassuring when you're searching for answers to help make one of the biggest decisions of your life! Lorrie never even skipped a beat. She was on the phone, sending emails and finding what I needed to make my life a little more directional at that point. Thank goodness for her calm, level-headedness when I so desperately needed to know I could find help! She's a brilliant mind, a great resources and a kind and caring friend when I'm at my most vulnerable. I'm so grateful for that.

Thanks #3 is for all the friends I've made through my new job. Tara is my working mommy counterpart and so much more. We have toddlers (Colin and Ella) and babies (Delaney and Alex who were born just 6 days apart) plus working husbands, etc... so we're kindred spirits. We've both faced the challenges of balancing work and family and it's only gotten crazier since we added baby #2 to each family. I can call her anytime (and vice versa) to ask about puking, or a rash, or "listen to this cough" or "can we got out for a drink with no kids tonight?!" She's so supportive of me both in the workplace and on a personal level. So, in case I haven't told you recently my friend, I'm so grateful for knowing that you've got my back.

Those friends are not only the people I work with, but the families I serve. Karen was the first person I asked about brain surgery. She explained what it involves, how you recover, the head shaving, the scar, covering it all with hairbands, scarves, etc... I needed some frank answers and she had them.

And then there's Julia, the mommy who can get anything done! She doesn't take "NO" for an answer when it comes to the health and care of her two children who suffer from a life-threatening disease. I should have known she'd have more information about working around my insurance than I do. When we found out I couldn't go to Mayo, unless we pay out of pocket, Julia immediately had more information. Now I know how to price shop, what to tell them about the fact that I'm paying myself, etc... Who knew you could negotiate for cheaper medical care? But apparently, that' s how it works when you want 2nd, 3rd or 4th opinions. I can't thank you enough for helping me to navigate the health care system.

I just know a little more every day how this job change and choice must have been part of God's plan for me. I would never have met any of these wonderful people, made these amazing connections, or spent this special time with my family if I hadn't asked for God's guidance, listened to his will, and followed his plan. That's all I'm saying... you fill in the blanks for yourself. They could be life-altering for you too!

Tuesday, March 18, 2008

Gamma Conference, Hold the Mayo

Okay, catch my breath before I start this. Lots of changes today.

We found out that although the doctors and clinics we wanted to visit at Mayo show up on my insurance database and are listed as part of the network, they're actually not. They're outside the magical 32 county area, and my HMO won't cover anything outside of that invisible geographic zone.

Okay now what are our options? There is 1 gamma knife in the KC area. The doctors who perform the "surgeries" meet every Monday for a Gamma Knife Conference to discuss cases which have presented in the prior week and which candidates are best for the Gamma Knife. This is like trying to get accepted to college. We try to impress them, and then if they accept us, we pay them more than our mortgage! They want to know where the tumors are? how big? what is my general health? do I prefer this method? Why? What date was the Magna Carta signed? (Kidding, but I think it was 1215, how sad is that, chalk it up to fearing for my life in L. Brown's class! This is something that only my high school chums can relate to. I've not lost my mind just yet.)

So they're taking up my case next Monday and I have an appointment with one of the Gamma Knife surgeons the following week.

For those of you keeping score at home:
- neurologist visits (2)
- neurosurgeon visits (1) and (1 scheduled)
- answers (0)

We're certainly trying out all the options. At least we'll have lots of information by the time we make one of the biggest decisions of our lives!

Friday, March 14, 2008

When Doctors Collide!

Okay, so you think a second opinion will give you piece of mind. But then you get two completely different opinions, and who are you supposed to trust?

Neurologist #2 says no problem with the Depo Provera shots to help control the ovarian cysts. He's not convinced that I've had a mini stroke. That's what we thought, but why is neurologist #1 so convinced that the shot is a bad idea? Am I putting myself at risk? Everything I read on this says I should if I've had a stroke. But who knows if I did or didn't? We may never get the answer to that one.

Neuro #2 also wants to put me on a preventative medication and stop the medicines to help with the pain of these excruciating headaches. Makes sense, but the pain meds in a preemptive mode are actually starting to work. These aren't narcotics mind you. Most of them are anti-inflammatory or vaso-constrictors, so they open up my blood vessels to get things moving and that stops the migraine.

Top it all off with the fact that now I"m worried that I"m starting to see some neurological effects. Maybe it's just my imagination from all the stress, but I can't seem to speak clearly lately. I know everyone stumbles over their words from time to time, but I used to read copy aloud, on live TV and make living doing it. I've always been a clear, concise speaker. At least I think I have. Suddenly I find myself getting tongue tied by Ella's bedtime stories, or phone conversations. Maybe it's that so many thoughts are suddenly running through my head. Who knows.

Maybe I'll mention it at my next appointment which could be in April with Neuro #2 if we stick with him or in July with the neurosurgeon, unless we switch to Mayo, or whenever with Neuro #1, because I don't have a follow up scheduled with them at this point. And so the fun continues.

Love, Love, Love


I actually snapped this photo on Valentine's Day and I should have posted it much sooner. Are these not the cutest kids!? Sure, she looks like she has him in a WWF stranglehold, but he couldn't be happier!

That big sister is just about Alex's favorite thing in the world! He watches and listens and follows her every move. So, when she takes a brief moment from her frantic pace to pay attention to him, he's in heaven.

I caught them in this momentary embrace before she saw me. She doesn't like to be seen acting like she loves him. She'd rather pretend to ignore his existence, and whine he's getting our attention. But deep down, she does love him. He's so important to her! She cries if she doesn't get to kiss him goodnight, even before nap time. She wants to know where he is immediately upon waking up each morning. Alex is part of Ella's everyday existence, just as he's become a staple in our family life as well.
Thanks goodness they like each other for now! I'm sure that before we know it, they'll be pulling one another's hair and "touching each others stuff" and we'll seriously wonder why we decided to have more than one child.

But for the rest of their lives, they'll be brother and sister. That's something you just can't take for granted.

Monday, March 10, 2008

Quick update and the case of the lost lipgloss

Ella is doing better. Troy took her to Costco last week and they came with the super deluxe Disney Princess Creativity Kit. For $19.99 we convinced her she is a big girl, she gets to do big girl things, and this requires big girl behavior at bedtime. We're still having to stick to a tight schedule, and it takes 30 minutes to an hour to get her down, but no more screaming for hours on end. That's a plus in my book.

My last test was Friday. TEE (Trans-esophogial Echo cardiogram???) It was fine. All normal, nothing out of the ordinary, heart looks good. GREAT! Now we know my cholesterol, blood pressure, heart, arteries, etc... are all normal. But did I have a stroke or not? and can I take some hormones to help with the ovarian cysts?

For that answer, we'll pay another $50 tomorrow to see neurologist #2. We've decided to get a second opinion. Since neurologist #1 and my wonderful OB (seriously I love this guy, even thought he's missed the births of both of my babies) differ on the hormone question. We also hope neurologist #2 may be able to help with the intense headaches, since this is the reason we went to neurologist #1 to begin with!!!

On a frustrating and sad note that only girls can appreciate. Troy lost my lip gloss! I brought my purse to the hospital for the scan Friday and instead of taking it to the car. (which he insisted he would do when I offered to bring a tote bag instead) he shoved it under my gurney. You got it, the lip gloss fell out.

Normally, who cares, but this is a new tube of lip gloss that I bought at the Spa at Big Cedar on our special weekend away and I love it! I has capzacin (red pepper flakes) in it, so it plumps up your lips and it's great! I rarely find lip products that I like, and I'd had this for less than a week! (Not to mention the fact that I paid $20 bucks for it! You'd think Mr. Cheap would be crawling around that hospital looking for it!)

"For the record" Troy insists this isn't his fault. But since I was sedated and legally unable to do anything important, I'll totally blame this on him. Hell hath no fury like a hormonal brain tumor patient with headaches and mommy fatigue who then looses her new, favorite lip gloss!!!

Tuesday, March 4, 2008

Scream til you puke... or I dump water on you.

Nothing is ever easy. Just as Alex gets his 8 teeth, I start having fewer headaches, health news seems to be fairly positive, Ella decides not a be good sleeper.

I'm not sure what happened, but she started waking up in the middle of the night a couple of weeks ago. It was right around the time we learned about the tumors, etc... and we chalked it up to stress. She saw me crying once, spent some time at Laura's while we went to doctors' appointments, etc... This was not the norm.

Then my parents came into town for a long stretch, so that added to the problem, and her tonsils or sinuses are infected, so we had a 5 day antibiotic to top it all off. We hoped the weekend at Laura's house while mommy and daddy were away might put things back on track, but no such luck.

Last night, Ella screamed for more than an hour. I'm not talking about crying or calling for us, she SCREEEEEEAMED! So violently, that she started gagging. We tried the usual come in after 1o minutes, then 20 minutes, then 40 minutes. We tried using the "big girl rules" which work so well at nap time. She can play with her babies, talk, etc... as long as she lays down and goes to sleep. We even threatened, and made good on the threats. Her band-aid was taken away, babies were taken out of her bed, etc... She was hysterical! We could not calm her down. (Yes as the blog entry indicates, I dumped the remaining water in her cup over her head in an effort to get her attention. We've done cold showers before or a spritz of water from the kitchen sink when she's acting up and won't "get a grip." This was the closest water available, so I used it. But it didn't phase her. So much for that idea.)

She didn't have sugar, she had a good afternoon nap, etc... Is there some underlying problem we're not aware of? Are we parenting properly by consistently forcing her to stay in bed, when she wants to come to our room or have one of us lay down with her? Should we stay with her and calm her down or leave her in hysterics to cry herself to sleep?

This battle is making my physically sick. I can't stand to sit here and hear my child scream like this. She begs me to "lay down with me mommy!" She grabs my face and pulls it to hers. She pleads for us to let her come to our bed and "make my happy." She seems to want and need us so much more right now. And I want and need her. My first concern when we learned of the tumors was for my babies. They need me! We're so close! I just want to lie there with her and love her all night long.

But that's not the best answer for her in the long run as a successful sleeper, is it? I just hope we're handling this correctly by staying strong and making her stick to the normal bedtime routine.

So far, so good!... but no answers.

Sorry I haven't updated sooner. Here's the latest:

We met the neurosurgeon Monday and he was unimpressed with everything. He doesn't even know for sure if the smaller spot is an actual tumor. He wants to watch for 4 months, do a repeat MRI and see if the larger tumor grows. The size doesn't concern him, since it's not causing any problems for me. But he wants to establish a growth rate.

I could have had it for 2 months, or 20 years. If it grows half a centimeter in 4 months, he'll recommend we remove it. If it doesn't, he'll say let's do another MRI in 6 months. I guess that's good. But I'll feel better if it hasn't grown after the 4 months.

As far as the mini stroke. So far no indicators of any problem. Cholesterol and blood pressure are good, arteries in my neck as "clean as a whistle", blood is not overly thick. I have one final test this Friday, where they sedate me, I swallow a scope, and they look at the arteries in my heart.

All this is to determine if a small spot that showed up which could be dead brain tissue is the result of a mini-stroke. It could be damage from migraines, or even childbirth, and not actual damage from a stroke. But we'll know more after they're done with everything.

In the meantime, I've had to stop taking my birth control pills. Not a big deal, except that I tend to get ovarian cysts. The pill helps with this. Since I stopped taking them a couple of weeks ago, I developed a cyst, which burst last Thursday overnight. The pain can only be compared to a kidney stone. I felt a twinge, got up to pee, and found myself lying in the bathroom floor, trying to stay conscious. Luckily, I called for Troy and he came in to check and didn't walk on me in the dark. About 30 minutes later, pain was gone, and not a problem since.

Here's the hitch, my OB says without any oral hormones, this may happen again, every month, at random. The pain I can deal with. I've passed 16 kidney stones for heaven's sake! But the fainting unexpectedly, not so easy to accept when I'm driving or home alone with the kids. Thankfully, I have a great OB who's helping to work this out with the neurology folks. He thinks some good options exist, if they'll sign off. If not, we may get a second opinion from another neurologist, since this seems like a pretty big deal to us.

That's it for now. More to come later this week and as we learn additional information. Thanks for everyone's prayers and support!

*** footnote***
Our weekend away was AMAZING! We slept, ate, shopped, I had the greatest massage of my life! and we finally convinced ourselves to come back and retrieve the two kids. We have to do that more often!