Relief

I woke on Saturday and continued to unpack, and as the minutes, then hours passed I became more and more anxious. It hit me like a ton of bricks that the MRI was a week ago. That's a long time to not have results. In the past, UW had emailed me test results from their secure system, so I decided to log in and email the doctor's office to see if they could send the report. I knew it was a Saturday, so I didn't expect to get any response (other than an automated one) until the work week began, but bam within 10-15 minutes the report was in my account. It really improved my opinion of UW. I have had some bad experiences with the oncology department, but it's nice to have positive experiences with other departments to wash away any negative feelings.

So anyway, after Dan and I read the report, I posted it to the blog so that you can see for yourself. We feel incredibly relieved with the news. I feel like this MRI report is the best one yet. I'd love to see less flair/T2 signal, but for now I'm just thrilled to not have any nodular area/no tumor and no uptake of contrast dye. 

It took several hours for the report to kick in, and I guess it still hasn't. I'm kind of riding a wave of relief, and it feels fantastic. I even dreamt last night that I was sailing. :)

To celebrate the wonderful news, Dan wasn't satisfied for me to just watch girlie movies cuddled in a blanket on the couch, so he stepped up his game and we grabbed some friends. Removing his bias against dancing, we went out and boogied! I am a ridiculous dancer, but a happy one. I'm always game for dancing, but when it's to literally celebrate life, it feels even better. :)

MRI Report (6/20/13)

Examination: MRI BRAIN WO/W CONT Indication: WHO grade 2 astrocytoma in the left parietal region, status post gross total  resection.  Comparison: Most recent MRI from April 20, 2013  Technique: Non-contrast Head: Axial T1, axial T2, axial diffusion.  Post-contrast Head: 3D FLAIR (Sag, Ax, & Cor), axial diffusion. Axial, coronal & sagittal T1. Contrast: Contrast Agent Prohance 15 ml 07/20/2013 INTRAVENOUS Findings: Again identified stable changes related to left-sided craniotomy. The left  parietal lobe resection cavity is unchanged in appearance since the prior  exam. The prior described nonenlarged T2/FLAIR hyperintensities surrounding  the medial and anterior aspect of the inferior part of the resection cavity  (604/38 and 39) unchanged in appearance since the prior exam.  Hypointense signal involving the medulla on T2 appear to be artifacts. Postcontrast imaging demonstrates linear enhancement in the surgical cavity  underlying the craniotomy this is unchanged from the prior exam.  No nodular enhancement in the surgical bed. Small DVA in right frontal lobe. There is no acute infarction. No mass effect no hydrocephalus.  The major intracranial flow voids show expected appearance.  Bilateral paranasal sinuses and mastoid air cells are clear. Bilateral orbits  are normal. Impression: Compared to prior MRI from April 20, 2013, Stable appearance of resection  cavity in the left parietal lobe with nodular T2/FLAIR hyperintensities along  the anterior and medial aspect of the inferior part of the resection cavity.  Continued followup is recommended. No acute intracranial process.

More Cherries

Taking a break from packing, unpacking, and the joys of moving (it's too hot for this...ugh), to share some news about another cherry run. Back by the graciousness (is that a word?) of Kings Market and Market Place in Friday Harbor, my dad and our buddy Ron delivered another batch of cherries, this time organic. So if you haven't gotten your fill of sweet stuff, or know someone who wants to get regular...ahem....please feel free to purchase some delicious cherries to celebrate summer. 

Dan, and my family, and I appreciate the support so much!

Happily Developing

Inconvenient for moving, Dan has the keys to our old home. Conveniently, that forces me to walk Emma down to the lake for a swim. It is officially summer in the NW. It is and has been, hot (by Seattle standards). It's gorgeous! Today came with a swelter first thing in the morning, pure sun. The dawn peaked her head with a beautiful haze of deep blues, graduating to the babies, then, bam, sun. It was so bright in the five o'clock hour that I wanted to get up and get to packing, but I haven't been sleeping very well, so I adorned myself with my eye patches, and Bose noise canceling headphones. It's a good look. Have I mentioned I'm a light sleeper? I had been enjoying the several days of fog rolling in and burning off midday, keeping things cool. It felt fresh, reminding me of gorgeous San Francisco (one of my faves).

I had been meaning to walk over to UW to get my radiology report on Monday, but I'm scared. And it doesn't sound fun. The report is usually available at the records department within 24 hours (according to the MRI tech). It's a pain that I have to go get it myself, but oh well. We also mailed a hard copy of my scan to Dr L on Saturday. I figure I'll hear the news when I hear the news. I'm not interested in doing radiation at this point anyway, and that's the only thing my western doctors have to offer. 

On another note, it's a shame We had to move, if only for the fact that my garden is happily developing. Hope the next tenants love cucumbers...

Happy Socks

MRI Images

No obvious uptake of contrast dye. Nerve wracking morning. The T2 flair appears to have increased, and the definitions have expanded in a couple of directions, but all-in-all we feel like there's no massively obvious area to panic about.

We (Dan and I) are not trained in MRIs and don't know what we're doing, we just like to compare my brain scans so that we can visualize what's happening in there. 

I would not surprised if the report comes back with bad news; we never like seeing more on an MRI, which is our perspective on the images. But I will not worry too much until I read the report, or hear from Dr L. For now, I feel relieved that the tumor appears to still be low grade, and there is no clear nodular area (that us laymen can recognize).

On a side note, my tumor area looks like a happy dog, panting...do you see it....it has hot breath coming out of the mouth.

The image on the L is April's MRI, and the R is today's. On these images they look almost exactly the same, but with the large screens, it does appear that July's scan is much brighter, and the lines may have expanded in areas. Guess we will have to wait and see. In the meantime, it's another moving day, sweet!!!! I'm all about fun distractions. Onward and upward!

New Home

Dan and I have been gloriously distracted by moving to our new home. It's so exciting! We started looking for a rental, and had become quite disheartened. Seattle's rental market is bloody, and vicious; it's been hard vying for a home out of hordes of people. 

Dan and I had been feeling the pressure of finances for quite a bit, and as people have been so generous with donations and by purchasing cherries, we have been anxious to find a tiny, safe, happy home where we can save money for shots and other medical needs. 

So after feeling disheartened, and fearing we wouldn't find a place for several months (and being rejected twice already), on Wednesday, after visiting Dan for lunch, I walked past my favorite home at Greenlake. Serendipitously, the front door was open and the place was empty. Mind you, I have been enamored with this little gem for two years, ever since we moved to Greenlake. I pass by it every time I head out for a walk. Anyway, there was no one around, but I had a good feeling about it so I sat down on the front steps with Emma. And sit we did. For just under two hours. Then the landlord arrived, and fabulously, fate had intervened. He brought doggie treats from his car for sweet Emma, and we hit it off immediately. 

I wanted to sign on the spot, but the gentleman wouldn't let me do it without at least showing it to my husband. I giggled and said, "Oh, you're right. But I just know he'll love it - we've talked about it many times." And you know what, it turns out I was right. We received the keys the very next morning, and have been cleaning, and moving (little by little).

It's less than 600 sq feet, so we are truly sifting through our things for only the necessary. But it's glorious, and the monetary savings are such a massive relief. I can't even express the excitement for our new home. It's funky and quaint, and makes our life so much easier. It is a happy home full of sunlight and surrounded by a thin garden full of gorgeous plants that I can nurture.

I'm serious about this, at each step, each turn, I continue to be amazed and grateful for the gifts in my life. Things constantly continue to get better and better. Even when times are tough (toom-ah), each day I'm blessed with gifts. 

Fingers crossed for a clean MRI tomorrow morning, but if not, there are more things I can attempt, more treatments, more tricks. I'm not going to fib, I'm terrified. This is a huge MRI since one of the three hospitals felt there could be progression. We will find out soon if they were on to something, or perhaps they jumped the gun. I'm going to need constant mental reminders to do my deep breathing. When in doubt, think of other people, and wish amazing things for them. It's always distracting. Some people call it praying...I don't really know what I call it. The only thing I do know is that it feels good to do.

Our new great room...

Dreams Shreams

Good morning! I've been distracting myself before the MRI with friends and walking. Yesterday I walked to Dan's work for lunch, finding a cool new path...

Of course, even with my best efforts at distraction, I had a nightmare last night that I had a 2 cm tumor. I'm not a dream whisperer, but maybe it's one of those reverse reality things where the opposite is true? That's what I'm going to decide to believe. 

I have been having such an amazing summer, and as corny as it sounds, I'm happy each day, waking up excited about my life, my friends and family, my little garden, our sweet Emma and baby Bingie. 

I haven't been researching as much, instead taking time to live my life, and enjoy myself. If the scan is bad, I'm sure I'll nose back into the research, but I have to say that these past few weeks have been such a treat!! 

I just feel so fortunate, so blessed, and incredibly grateful for my life. I don't know how I got so lucky! 

Thank you!!!

I keep getting more and more texts and emails about the cherries, how delicious they are, and it makes me giddy. Dan and I feel so loved! I should have asked, if people felt like it, to shoot over a photo of them with their cherries. The anecdotes have been hilarious, and kind, and just everything that life, and friendships are all about. I can't believe how lucky we are. Life is just wonderful. I know I sound ridiculous, annoying even. Maybe even insincere? But from where I'm sitting, I have nothing but gratitude in my heart. I know it won't always be that way, how could it? Or could it. I don't know. I'm not sure what life's about. Where life will take us, how bad it could get, I have no answers. The only thing I have is each moment, each friend, each laugh and kiss with Dan, each hug with family, and it completely makes my life full of joy. Disclaimer: I do get cranky, and such, but with such an amazing life there isn't much to complain about. I just feel so loved. Thanks guys.

The Good Life

There's nothing better than a Greenlake picnic. Dan is so great about seizing the moment. It was just the two of us, but with the blanket and picnic utensils, given to us from the Malones and Farraghers, it was as if we had a bunch of friends surrounding us :) 

Life is good...

Stabilizing Blood Glucose

I was worried, while I was out of town that my little garden might have died from the heat but alas, instead, my flowers were blooming!

I'm starting to feel more rested. I had a fabulous 11 hour sleep last night. It was glor-eee-ous. Since I'm back and I have less than 10 days before my MRI I wanted to hit my restricted ketogenic diet hard, but my blood glucose numbers were wild. I don't know if being on the restricted ketogenic diet causes your body to become more sensitive to insulin or perhaps desensitizes you, but it has been insane. Before I headed out to Friday Harbor last week I had an episode where my blood glucose fell so low that I felt like I was having a seizure. We believe it was not a seizure though, just a severe hypoglycemic attack. It was very scary. Because of that episode, we decided that while on vacation I was not going to be fasting or restricting calories, or being nuts about food choices. As you know from the previous post, my body was all messed up from traveling and excessive excitement, so it's probably a good thing that I wasn't being crazy about my food too.

Yesterday, back on my regular plan, I was freezing and very dizzy. I wasn't even doing anything, I was sitting down. I quickly decided to check my blood glucose and it was 45. That is dangerously low. I was having problems thinking, it was confusing me to even work my blood glucose monitor - I couldn't figure out which end of pricker thing to draw blood. I immediately ate 2 ounces of nuts (that's quite a bit), and it caused a temporary rise of 13 points, then within moments I was back down to 51. I couldn't stabilize my numbers for the life of me. Worried I was going to endure a hypoglycemic seizure, I ate half of a banana (definitely not ketogenic). I don't know what's going on in my body, but this tumor killing blood glucose range of 55-65 for Seyfried is very, very tricky. And if you're not careful, it can be dangerous.

I know I can figure this out, and I know it will continue to get easier so I'm not worried, but I figured I'd share my experience in case anyone else out there trying to do Seyfried's plan had encountered similar problems. It's very tricky playing with low blood glucose when you already have a seizure problem. Almost like playing with fire. But if we didn't play with fire we wouldn't have much of our food. Know what I mean? And I know that it's important to keep my blood glucose very low in order to keep circulating glucose low so that I minimally feed the tumor. I say minimally because it's impossible to completely limit glucose. Our body creates glucose from excess glutamine (protein), and also I've read that our bodies can convert one of the triglycerides from fat (not much, but still important to know - that's why you can't eat unrestricted fat) into glucose. Anyway, I'm getting too detailed, which can get boring. It's all stuff that you'll read about if you choose to get into this lifestyle. In fact, here is the most comprehensive website that I've ever found about the KD. It is inspiring, encouraging, informative, and I enjoy rereading it often just to boost my excitement about the program. This diet is fabulous for anyone, it benefits cancer patients, those with Alzheimer's disease, diabetics, those with seizures, and so much more. The information is fascinating, whether or not you want to follow it. Enjoy! http://www.ketogenic-diet-resource.com/

It's too bad this restricted ketogenic diet is so clearly proven and undeniable. Carbs are delicious :) I can't help but notice the similarities between carbs and cancers, and the brain, with seizures, Alzheimer's, mental health, migraines, and of course diabetes, and so much more. We are killing ourselves with carbs and sugar. The carbs and sugar aren't just making us fat, it's literally causing diseases, and cancer, and brain metabolism issues. Looking at it now, it has become obvious to me. There's actually a new prescription "food" named Axona which helps people with Alzheimer's disease. It boosts the body's ability to create ketones so that the brain has more food. The Axona website says that the side effects from Alzheimer's are due to the brain's inability to metabolize glucose. So, if you're on a standard diet which is all about glucose and no ketones, the effects of Alzheimer's are going to worsen. However, if you switch to a ketogenic diet it will lessen (theoretically - I am not a doctor) the side effects, strengthen the brain, and possibly even heal the brain a little. There is a lot of research out there, and most doctors don't know anything about diet. (Blah, blah, blah, "heart healthy diet" - no bueno, that's actually the opposite of what you should be eating.) I'm not trying to be rude, it's just a slow process to integrate new research into hospitals. Practicing doctors are very busy and usually aren't researching up-and-coming stuff. Anyhoo, just wanted to throw that out there in case you hadn't heard that the ketogenic diet can help a lot of conditions (not just brain cancer). I hope this info helps at least one person. :) I can't say enough how I wish diet didn't matter, that we could eat whatever we wanted and there would be no repercussions, but it just isn't so. The good news is that we can help heal ourselves (to a certain extent), and that is empowering.

As a side note, people with Alzheimer's don't have to get the prescription Axona powder, they can just get on the ketogenic diet. There's no trick, it's just the pharmaceutical company found a way to make money off the 4.1 ratio of fat:carb+protein. Just wanted to throw that out there. It certainly does provide another tool in the belt though!

2nd Annual Cherry Fundraiser

Oh my goodness, I am exhausted. Best week everrrr. Of course, I have a habit of saying things are the best ever, or that's the nicest person in the world. Or, I'll meet someone once, then in the future I'll refer to them as my friend. Lots of friends laugh at that, but maybe it's an island thing? We're like family, and that is just how I was raised. I'm still working on not making friends with everyone I meet on the metro bus (it scares the bejesus out of Dan and my parents).

So, on to some very exciting news...it is time for our annual cherry fundraiser. This year our clan has been so exhausted with all of the NYC, NC, and other travel/research/life that we just don't have the energy to tackle the Seattle and Roche Harbor cherry booth sales, or the individual sales. Luckily for us, Kings Market and Market Place in Friday Harbor were interested in purchasing cherries from us. So yesterday, my father stopped by Stemilt Growers in Wenatchee and they loaded up boxes and boxes of freshly picked cherries. My dad continued on over to Anacortes to catch the ferry to FH, he unloaded cherries with help from KM & MP, hugged my buddy Libbey, then Dad caught the next boat off the island and drove all the way home to Wenatchee. Talk about an amazing father!!! I am so thankful to Libbey Oswald and John McBride for buying cherries, it is such a treat for us to be able to sell a large load of cherries.

So, starting today there are cherries at Market Place and Kings Market. Please, if you stop by either store and buy some cherries, think of me and know how grateful I am for the help - just smile and know that I'm smiling and wishing I could hug you. The island is integral to who I am. It's my Disneyland, my heaven on earth, my sanctuary and where I find solace. Thank you for loving me, raising me, growing with me, sharing memories, for teaching me, for all of the amazing friends and of course for giving me my wonderful husband (thank you Linda!). Thank you Friday Harbor, I love you.

I'm still very exhausted from my amazing trip to Friday Harbor, so please forgive my lack of email responses and such. By Saturday morning I was so exhausted that I slept most of the day, and evening. It was such a bummer too, I missed out of sailing and kayaking. It's tricky though, as I get tired my right hand, arm and leg stop working, they become dead weight. 

I've gotten pretty great about hiding it (if I do say so myself), but it always scares me. The only thing to do at times like that is to lay down, even if I don't sleep. And, as you can imagine, my tumor problems are not conducive for kayaking :) I bowed out of the activity, not needing to explain which was nice. I don't like to dwell on the issues, not wanting to make it a bigger deal. I'm just excited to get invited, and I'll bet if I really wanted to go the girls would have found a way to figure out a Houdini solution. It's tricky because I don't want to have friends not invite me because I have cancer and am unable to participate at times. My true friends have not batted an eye about my limitations, always wanting me around, knowing there's always a way to work it out, and it feels really good. Yes, I have cancer, yes, I'm also human and want to do everything everyone else does. I don't even mind bowing out, I just adore my friends for including me, then also understanding when I'm too tired. They make me feel very loved.

By Sunday morning my right eyelid had joined my rogue right hand, arm, and leg. It almost looked like my eye was melting. Thankfully it is sunglasses season! And if I need to take the sunglasses off I just cock my face, or left eyebrow. There's always a way to trick people. I'm becoming a master of disguise :) or of disguising my ailments anyway. The eyelid is slowly getting better, and I'm sure once I'm rested I'll be back to new in no time! My next MRI is on the 20th of this month so we will see what's going on in my brain soon enough. For now, I'll rest.

Here's a few random photos of the trip...

I wish I would have taken more pictures. At the time, I'm always having so much fun that I don't think about it, but I've got to just make it a priority. Looking at them always makes me smile :)

Friday Harbor 4th

For those of you around here, you're well aware of the 80-90 degree heat we've been enjoying. It makes for spotty sleep (Seattle builders aren't keen on AC), but my bones are in heaven. Although the inside of our place is an oven (poor airflow at night), oddly, it has caused me to become crafty and curious - it's too hot to sit. Not caring that I have little to no experience I hemmed address, fixed a hole in another dress, and added straps to a third. I also have my sprout condo in full effect (I can grow three large layers of the guys at once - it's a true farm). Finally, this morning I tried my hand at sun cooking tea bags - or whatever it's called. Iced green tea is my favorite beverage treat (other than wine of course). Sunning the tea is fun to watch, not like watching painy dry. (I mean, come on, it's in the sun - what's not to like?)

This week has already been fabulous, for many reasons; the sunshine, my health, my ketone/glucose (I hit 6.9 ketones one day!) - jeez, what's not to like! Soon, we will be headed up to Friday Harbor for the 4th of July. To head home to my favorite place in the world, to laugh and boat and walk and BBQ, hang with family and friends, I truly can not ask for a better gift.

When I head north toward Anacortes, as soon as we set the car to cruise control we get goofy, we car dance, and our stress melts away. And each time we go, we run into old friends, hordes and hordes of them, and we share hugs, and stories, and my soul fills with gratitude and giddiness. I am so grateful to be an island girl! 

This week is just going to be fabulous, full of love, laughter, and of course some serious shenanigans. Being amongst some of our closest friends and family will rejuvenate our souls in a way we have needed in a big way. San Juan Island is my safe place, my cocoon. 

I just can't wait!!