Thursday, June 26, 2014

Cherries Are A Superfood!

I'm home, and although I tried getting back to bed this morning (at Dan's request) I can't help it but hit the ground running. My parents will be here in a few hours to spend the night, as they're flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent's house. Because - for the first time - I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we're back on the next ferry off the island so that we can make it home and rest. Isn't it crazy how everything always bottlenecks? NYC, venom, cherries.

Cherry season is my favorite. They're so delicious! And really fun to eat. I mean, maybe not if you're really proper, but I'm more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I'm a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which sneaked up on me). This year, instead of one big drop, we've divided it into three deliveries to Kings and Market Place in Friday Harbor. So to all of our Friday Harbor friends, when you're walking through the produce isle next week, and you have a hankering for cherries please know that I appreciate your support so very much!

Just yesterday I had to write the check for my shot and with the Euro so strong against the dollar it was over $5700. The treatments are stupid expensive, but surviving seems pretty smart, so whatever it takes I'm willing to do it. Also while at the doctor in NYC I discussed the sodium phenylbutyrate again. He said that it not only helps reduce glutamine/glutamate absorbtion which would slow tumor feeding, but also, the drug is a gene modifier. The problem? The market price is currently over $6000 a month. That's the actual cost of the product used in clinical trials. There is also a chemist's reproduction (you have to find a chemist pharmacy) which is not exactly the same as the drug, but very similar, essentially it's a knockoff. And it comes in at around $1200 a month. The third option is the supplement Butyrex which I own and have taken from time to time. But it's degradingly weak in comparison to the drug. So much so that it's probably a joke for what we're drying to do. There is one health insurance in the United States that will cover sodium phenylbutyrate for malignant gliomas, Aetna (technically it's an off label drug for urea cycle disorders). I do not have Aetna, but since I lost my insurance due to the Obama health care act (long story) and they bounced me down to Medicare, there could be a way when I renew in December to opt into Aetna for prescriptions. It will take until December to find out, but at least there might be a chance. As an aside, a while ago I spoke to the mother of a young woman who has taken sodium phenylbutyrate for around a year (or maybe it's two years by now) and she didn't have any real symptoms. Now, you might think I'm crazy that I'm talking about adding more treatments, but these tumors are invasive, and they morph and outsmart even the best cocktails. I mean, when you get a promotion, you don't just sit on your ass, it sparks you to keep the momentum going! This tumor is my career; I get paid in time. I don't want Hermie to come back. I refuse to be complacent. And if the additional treatment has a low risk profile, I don't see why not. Especially when we already know that IDH1 tumors, like mine, love them some glutamine/glutamate.

This brings me to a another fun rabbit hole I fell into while traveling. Are you guys familiar with methionine? I wasn't until I read THIS STUDY on the airplane last night. For those who don't want to read through the article, it's about dietary changes that you can make to prevent, and mitigate gliomas. One of the points was to focus on methionine restriction, which is an amino acid that is found in the heaviest doses in animal products.

Of course, then this morning, I had to know more. I started searching "methionine glioma", "methionine seizures", "low methionine foods", "methionine longevity". Each search result gave me more information, and more avenues to explore. Again I see that a vegan diet is best, but if you can't go strictly vegan, it would behoove all of us - especially cancer fighters - to cut back on animal products. Even the research with the ketogenic diet shows that it's not healthy unless it's restricted. A purely ketogenic diet is horrible for you. It irks me when I see articles and news reports touting the benefits of the ketogenic diet because they're missing the key point which is the restriction. The diet is actually mostly fat. Like 80% fat. So, of course you're eliminating a lot of glutamate/glutamine, glucose, methionine, etc. Heck, the restricted ketogenic diet is actually more like an elimination diet. You remove a lot of allergens. Anyway, not my point. The reading from last night and this morning reaffirms my choice to go heavy veggies, with an emphasis on superfoods (it really should be a one word term).

See - I can't help it, I start doing tumor research even when I'm supposed to be focusing on my seizure issues. The seizure issues are incredibly complex, almost too complicated to figure out. And the research about seizures is either very inconclusive or correlative but not necessarily causal. There's just so little we know about what causes seizures, or how to prevent them. Another horribly complicated riddle. I actually enjoyed researching methionine since there was clear information I could absorb and use. But for now, I'd better give my brain a break before it short circuits again. Also, thanks for all of the recent comments lately, I'll go through them soon!

Tuesday, June 24, 2014

Off to NYC

I'm headed for my tenth immunotherapy shot right now. I'm a little nervous since I'm barely back on my feet after that harsh seizure. My brain is foggy, and unstable, and I've been dizzy, and frustrated. I'm sick of having to deal with seizures.

I feel like a prisoner in my own brain. You'd think that because we have the wonderful news of no current tumor, that life would get easier, but with the seizures, I've been isolated further. Instead of not being able to drive, now I'm trapped not only in my house, but deeper, worse, I'm trapped in my brain. I don't trust myself; my arm and hand get funny; my vision changes; my blood glucose drops; I feel off; am I having a seizure? Do I need to go lay down? Do I need to grab an ice water or something to stabilize by levels? 

If you've read the blog from the beginning, you'll remember the times I tried anti-seizure meds. I've been on three before. Each time they made me violently depressed, not able to leave the bed. I didn't want to bathe, or even read a book. I would stare at the wall, and when people would come check on me I would lash out. It got progressively worse, ultimately to the point where I didn't even want to live. I felt there was no point. But here I am, a couple of years later, desperate. I can't live like this. That's what I told Dan. We talked, as I laid in bed, with hot cheeks, and a damp pillow, I told him that we have to get back to the days when I didn't get seizures. Or at least it was a rarity. Not back before the tumor (that's impossible), but back when we lived at Densmore. We had a specific diet, and a specific lifestyle, that worked. No more crazy tumor diets. Dan and my parents have been adamant about me avoiding anti-seizure meds - they remember the effects. So I agreed once more that we could try diet and lifestyle one final time, but if it doesn't work, I'm trying more meds. No one understands (unless they've dealt with seizures) how isolating, and terrifying, and limiting they are. It's exhausting, not just for my brain or my body, but for my soul.

The meds are still scary, I don't support them fully, but I'm desperate. Just looking back into them is frightening. They can have side effects like infertility, or other issues which you wouldn't anticipate a correlation. More obvious issues include slower thinking time, memory issues, here's one link with information:

For now, I'm back on track focusing mostly on seizures, not necessarily tumor prevention - although often they have similar treatments, two birds one stone. I kinda feel like I'm playing wack-a-mole right now, and all I want is to be able to live, to cook a meal, or go for a run with friends and not worry about being stuck and having a seizure. It's ridiculous, and I hate it. Just when we get great results about the tumor, the seizures flair up. Incredibly lame. 

As we talked, me mostly venting, Dan made 12 guidelines to get us back on track to emulate the Densmore days. Here they are in no particular order...

1. No processed sugar
2. Limited fruits (an apple a day, or berries in a smoothie)
3. No grains/legumes
4. Unlimited vegetables
5. Limited/moderate nuts/seeds
6. Lean meats (but only 10% protein daily)
7.  Regular nights in bed by 9:30 pm
8. 60 minutes of excercise daily (even if it's walking, or floor exercises at home. Doesn't have to be consecutive minutes.)
9. Limited dairy
10. Only decaf coffee, and that should be limited as a special occassion treat.
11 & 12. I can't remember right now.

We'll see how it goes. Essentially, it's just a guideline to live healthy, and happy, and it should get me back on a regular stable blood glucose (low BG is a trigger, which can often come after a spike), have more regular energy (excercise as a priority), and better rest (regular sleep schedule). You'd think I could just do this whole thing already, that if I just lived moderately, that it would all be fine. But I have some triggers that I need to isolate. I have to pinpoint the problems so that I can avoid the issues. Please wish me luck. I'm so tired of fighting, fighting the tumor and the seizures, but it's what I have to do. I won't give up. There has to be a way to succeed.

Wednesday, June 18, 2014

UCLA Results

finally mustered the strength to call UCLA for my MRI results. They agreed with the UW radiologists that there is no visable tumor. The fun twist is that instead of automatically planning my next MRI with a Dopa PET at UCLA in October, they recommended that I just stay here in Seattle. If the Seattle MRI shows up questionable, then I will need to fly down for a Dopa PET. So now, all I need to do is keep fighting, stay healthy, and have no new growth in October. Not having to fly down to UCLA would be a huge relief, both financially and emotionally. 

Flowers from Danny after the good news...

My brain is still hazy and slow after my seizure, so this is all I have in me to write. Like an earthquake, there are aftershocks of energy throughout my brain and at times it feels touch-and-go so I really need to force myself to rest. As it always is, I know the threat will subside the longer I make it from the seizure. I just have to be patient.

For now I will relax, falling asleep for my nap with relief, and a smile. I can deal with seizures for the rest of my life, I'd be happy to. Compared to the tumor, they're just like gnats. Annoying, but I can live with them.

Sunday, June 15, 2014

Water-Only Fast = Seizures

Oh fudgeknuckles. I did it again. The thing is, you'd think I'd remember that I have stress-induced seizures, and here I was doing a several day water-only fast. And the whole point of a fast is to stress the body so that it cleans out damaged cells. Stress, the word is written directly in the description. Fool. I always think I can handle more than I can. But the payoff (a completely regenerated immune system) was so great that I had convinced myself that I could handle it. I believed that I could make it three days and that it would be great. 

But that's not what happened. About two hours after that last post, I was waiting for the iron to heat up to press Dan's shirts, vacuuming the house to kill time, when I started to feel off. I told myself that everyone doing a water-only fast feels off, but I still made my way to the kitchen to eat the second half of my papaya. What I noticed first, was that my right hand and arm were icy cold, and I was having a hard time spooning the papaya meat. I thought to myself that I needed more fruit, that I didn't feel well but needed something gentle on my stomach, but we didn't have anymore. One trick from my doctors is to eat something sweet when you're about to have a seizure, I guess it's supposed to help slow the onset, or perhaps even lessen the intensity. When I have my stress-induced seizures I'm typically hypoglycemic (another reason that I've come to reason why I probably shouldn't fast). I've checked my blood glucose levels a few times just before seizures, knowing I wasn't feeling well, and it's always in the 40-60 range. This time, after having eaten the rest of the papaya I was at 69. Even with the symptoms, I was surprised by the number. I guess I should take that stuff more seriously.

After eating that final half of papaya, I didn't have anything sweet in the house, that I could think of, until I remembered my mom's cherry bourbon jam. It was a miracle that I got that jar open. (I live with a man with the grip of a giant.) I spooned out a bite, then realizing that I was out of my seizure pills, I walked to the bedroom to lay down. Looking back I knew it was coming, ultimately, from the time of the second half of the papaya, but kept pushing to check my blood glucose and get that jam. I wanted ice water too, but knew I was about to hit the floor if I didn't just give up, and retreat to a safe place. It was so cold in there, probably low 50's (we don't have central heat), that I had to get back up and turn on the wall heat. As I laid back down, shivering, I kept thinking, "Breathe. You're fine. You can get through this. This is no different than normal, other than the lack of pills. It won't change anything. Deep breaths." And as the pins and needles in my hand grew stronger and creeped up my right arm, hot tears dripped down my cheeks and landed into the basins of my ears. I stared at the ceiling as things progressed, ever more painful as it reached my shoulder, then my face. When it hit the top of my skull I could have thrown up from the inner hammering, but I was too distracted. I realized in that moment, that there was nowhere else for the energy to go but back into my brain. For many, these seizures often progress into Grand Mal seizures, or turn into a series of episodes. I braced myself. Already it was the most aggressive seizure since my onset seizure back in 2011, a Grand Mal while driving. Usually the tingling stays around my hand and arm, but this one kept progressing until it had engulfed my entire right side. And it hurt, oh God did it hurt. In unchartered territory, I didn't know if I was headed into a more scary state, loss of consciousness, vomiting and choking to death, losing control of my bowels or bladder. I new I was helpless, so I kept taking long, slow breaths. 

As I braced, I twisted my neck to feel the cool pillow on my right side (that half of my body was on fire to the touch). In that moment, the coolness soothed my face and my mind and I had the sense that it was going to be okay. Under my breath, I began whispering over and over and over, "Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you. Thank you."

As the seizure subsided, the pain continued to surge, but slowly lessened into a deep monotonous throb, both down my arm to my hand, and throughout my brain. Usually my seizures don't cause that kind of severe headache.

Not feeling well, still reeling, and aware of the seizure activity swirling in my body, I knew I needed more lorazepam, and I needed it soon. I called Emma into our bedroom (she's not normally allowed - she sheds too much) and asked her to come lay down on our bed to keep me calm. I've read that petting animals soothes the brain. I then called Dan and let him know the basics. He was headed home anyway, so that was handy. I then set down the phone to rest, just talking on the phone seemed to re-trigger the seizure energy in my brain. It was too hard to think, to talk. But I was scared, I knew I needed more pills, but Dan was driving, and I didn't want to bother him. I didn't want to put him in danger, knowing he was probably already speeding to get home, I wasn't about to add a phone call while driving to his tasks. I took several breaths and called my parents and gave the cliffsnotes of my dilemma. They asked for my doctor's name and quickly told me to hang up, that they would handle it. 

For the next 15-20 minutes I went in and out of various states of nausea, and tingling, and shivers, and hot flashes. I remember wondering if I should go find my empty lorazepam bottle and lick the old dust particles for some of the microscopic relief, but it seemed like too much energy to muster. The pain never went away, but did eventually subside. Danny was able to pick up the prescription, the one my parents were able to get renewed, I took a Lorazepam and everything eased up from there. The headache remained for the rest of the night, but I didn't have anymore seizures.

Needless to say, Friday was eventful, and perhaps a clear sign that I'm not meant to challenge my body with several day water-only fasts. Not as a person with stress and hypoglycemic induced seizures. You'd think I would have assumed it before engaging, but it never seems to get through my thick skull (not even through the surgery cracks) that I am not normal. I have special needs. I like to believe that I'm just like everyone else, but it isn't the case. One of these days, I have to accept it.

Friday, June 13, 2014

Day 3 Water-Only Fast

Oh man, I broke. I cracked. This morning I woke up with such strong hunger pangs that it was almost unbearable. I tried tricking myself with pint after pint of water. I sipped a few herbal teas, and paced around the house. I thought about going for a walk around the lake, but worried I'd get to the other end and run out of energy and become stuck. And it's cold today, and rainy (finally!) so that seemed like a bad idea.

Overnight, my stomach collapsed, and appeared inverted, concave. At least that's how it felt to me. It was very uncomfortable, kinda painful even. I still made it several hours, but finally relented. I grabbed the most gentle option, my trusty new favorite fruit, the papaya.

I only ate half, and discarded the seeds. Figured they would be too hard on the stomach. You can eat those gorgeous blackish green seeds. They taste like a combo of cracked black pepper and mustard. They're a fabulous anti-parasite food. You can toss them into salads (yum!) or add them to smoothies to clean your system, it's pretty neat. I love using unique foods for health. I figure there's so much that we don't know about the benefits of various food parts, but I'll bet there's a lot of healthy synergistic properties.

So, technically, I failed. I missed my goal by 10 hours. I ended up on my water-only fast for 62 hours. It's definitely the longest I have ever fasted, so I still feel accomplished. My plan is to remain on the fast to the duration, having only broken with that (delicious) half of a papaya. And man, I do feel better after having eaten a little. I imagine that the shorter than anticipated fast was still cleaning out some of my damaged cells, and probably stimulated my immune system to some degree.

From all of my reading around the interwebs, so many people said that when they broke their fasts they had no desire for junky food. That's how I felt yesterday, but man, I sent Dan a text a little bit ago and told him I could eat everything at PCC and then finish it off with a case of movie theater boxes of candy. Even if it was Good n Plenty which are categorically disgusting. So much for this changing my tastebuds, or squelching cravings. Oh well. Guess I still have to rely on self control. Less fun.

A couple of friends, during this experience, voiced concerns about the fast. A couple (remind me to send them Christmas gifts) worried that I'm too thin for a water-only fast (might be the first time I've ever heard such a thing about my body). Anyhoo, I am definitely not too thin. And to prove it I will share my stats.

Age: 33
Height: 5'7 (technically 5'6 3/4)
Weight: 140
BMI: 22
Body Fat: 28% [I still think the guy at the gym over-pinched with the calipers...:)]

So, according to the charts, I am literally dead center in the normal range. Healthy. I think that, perhaps, with the expanding waistbands of our culture - and the world - we have a skewed perspective of normal. I take it as a huge complement that some of my friends think I look "skinny" but ultimately, the optimum stat that I need to achieve is a body fat of 22%. A 6% drop. That's what I'm working toward. Body fat not only holds energy for cancer growth/tumor growth, but also toxins are stored in your body fat. Clearly, you don't want to waste away, you don't want to drop into an unhealthy range, but according to theorists, there is an optimal range for fighting cancer and they purport the 22%.

If you don't have much excess, it allows your body to focus on keeping your immune system strong. Your body can then clean out damaged cells, and keep things running smoothly. There's even research out there that people who live slightly underweight, have a lower incidence of cancer (lucky dogs). So, I'm trying to be healthy, to turn my body into a cancer fighting machine, to give her the most optimum chance to clean out tumor cells, to remove her tumor snacks. A side effect may be looking better, but that's just a byproduct. This is not driven by looks. I already feel good in my skin. More so than ever in my life I am confident. Probably since I have a different view on life since diagnosis. But I do acknowledge that I probably have a good ten pounds of pure fat that's visible on my body. I could lose that and still look really normal. I just need to curb my enjoyment of gorging on delectables. I don't know how I will ever kick my inner monologue that if one cookie is delicious, 10 is better. I feel like I was born that way.

I tried going raw vegan for two weeks and it made me feel awful. So I know that RV is not the lifestyle for me. I have a pretty good idea about what to do, and how I will be successful. It has to do with lots of veggies, and an egg here or there, and some nuts from time to time, and bits of fruit, but mostly it's about a caloric cutback. There will days that I don't restrict calories, perhaps for a hard workout day, or for someone's birthday celebration (like my own in August). It has taken me so long to figure out this whole diet thing, and laughably, I'm still living fluid with my beliefs. But it seems to be getting a little easier with the mantra of cutting calories, cutting portions, and eating clean, whole natural foods. It's all common sense stuff. You'd think I would have figured it all out a lot sooner, but I had to try several various cancer fad diets, hoping for a cure. Now I'm a little more reasonable. Hopefully this one works.

Thursday, June 12, 2014

Day 2 Water-Only Fast

I have had bouts of hunger throught the day, but mostly I just feel great. I cleaned the house, and did laundry. I talked to a buddy for hours on the phone (a rarity), and laid down for a nap. I am amazed by the amount of time I spend on food related energy. What's for breakfast, what's for lunch, what's for dinner, what do I need, chopping, blending, taking out the compost, washing dishes, going to the grocery store, thawing things, etc. I keep walking into the kitchen to get more water and am amazed by how clean the kitchen remains. 

I feel a little disappointed that it'll be over tomorrow night. It is all happening so fast. I can't believe how much I am enjoying this experience. It sounds insane, masochistic even, and I would never have imagined this as an outcome, but there it is, I can't deny it. Life is so much easier, the day oddly fluid, when you don't have the punctuations of meals. No more decision making, no more worrying about macronutrients, no more worrying about blood glucose spikes or counting calories. It's a mental vacation, and freedom from that judgemental voice always monitoring my food choices. I know I can never win anyway.

I don't want to downplay the level of difficulty, because it certainly has been hard, but it absolutely has wonderful benefits well beyond health. If I worked outside the home I don't think I could manage, not with the seizure issue, but thankfully, I don't. I have the safety zone of my little nest, and it continues to nurture me to health.

Wednesday, June 11, 2014

Three Day Water-Only Fast

I'm 21 hours into a 72 hour fast. This is why...

You can also read the article HERE.
If you're more interested in the research study, instead of an article click HERE.

There are all types of fasts out there; juice fasts, fruit fasts, broth fasts, minimal calorie fasts, you name it, there's probably a fast out there. They're a divisive topic with fervent stances on both sides. Some say they're great for cleansing, fabulous for your health, and others say they damage your metabolism, that they mess up the delicate homeostasis of the body. As for me, I don't know what I think. It seems like there's both benefits and concerns. But this new research study that's been splashing around the internet showing that fasting for 2-4 days can completely regenerate the cells in your immune system, got my attention and drew me in.

To keep myself sane, I have been drinking pint after pint of water, and a smattering of herbal teas (which I chose because they're are usually caffeine free and calorie free). This afternoon I felt well enough to walk the lake with Emma, but I'll be surprised if I'm able to do it again tomorrow, let alone Friday. I'm just trying to take it easy and get through this. I have a friend who's done a seven day water-only fast, so I keep reminding myself that three days should be easy. I mean, jeez, I'm almost a third of the way to the finish line.

I'm definitely feeling hazy, but the growls in my stomach are oddly refreshing. It reminds me that I'm strong, and dedicated. Too bad my subconscious didn't get the memo; I took a late afternoon nap and dreamed of juicy, chilled green grapes.

On my walk today I glimpsed this chalk message. How fitting. Maybe the penman was on a fast too....know what I'm sayin'? Ha.

Monday, June 9, 2014

It's All About Images

Good morning. Sorry I haven't written in a week, I've been dealing with a horrible reaction to one of my treatments - cystic acne. GROSS. It has been all over my entire face, and one of my saddlebags. (How is that even physically possible?!?) It was absolutely disgusting. I've since kind of gotten it under control. My friends didn't believe that it was that bad (apparently I'm always saying that my skin's broken out when I only have a zit or two - whoops, the girl called acne too many times) so I had to send them pictures. And finally, with solid proof, they relented, agreeing that my breakout was major.

I had been dealing with acne for the past month, and I wrote it off as stress related, a disappointing side effect of MRIs. But as it continued to worsen, even after the MRI, I realized that I needed to reevaluate the issue. First, I stopped all treatments except the blue scorpion venom. Then I looked back to the times I started various supplements, and I talked to Dan, analyzing if we remembered any bouts of acne. Finally, looking back to my log book (which is not as thorough as it should be, but still quiet helpful) we pinpointed the PolyMVA as the most likely culprit.

I also wracked my brain about any changes in cleansers, laundry detergents, etc. but nothing had changed. I started looking into the PolyMVA and read that it is comprised of a variety of B vitamins like B1, B2 & B12 (and some other antioxidants). According to what I've read around the internet, B12 stimulates sebum production (the oil on our skin) and excessive sebum is what causes cystic acne; it's what clogs the pores. Some people with even the slightest supplementation of B vitamins breakout in pimples, and I was doing major doses. Anyway, I'm sure you guys don't really care about acne, but I'm telling you the acne on my face was debilitating. I didn't leave the house until yesterday. Almost a whole week. Man, I'm vain. But seriously, my face literally hurt, so it wasn't actually purely about looks. I talked to another BT (brain tumor) friend who has been taking PolyMVA for, gosh, I think a year or two and she has never had any problems. But each body is different, and each body's needs are different. And I have exceedingly sensitive skin, it's practically impossible to please, so even the tiniest of adjustments could lead to a nuclear situation.

So how did I fix it? Well, I still had several days worth of Accutane, so I started taking those again. Accutane dries up sebum production. I also started putting tea tree oil on my face, a more natural way to do the same thing. For the first few days, it was not getting better, and I was frustrated, discouraged. Good thing my parents were headed over for the West Seattle all school high school reunion Friday, and my dad's 50th for West Seattle on Saturday, and mom packed the big guns for me. Gotta love moms, they're always saving the day. I've been terrified of chemicals, never knowing what contributed to my cancer, so I try and do things naturally, but sometimes in order to get things under control you have to make a deal with the devil. It took several applications of Retin-A, and several applications of Benzoyl Peroxide. Both, I believe, are known carcinogens (at least in some countries - our country likes dispute carcinogenic claims, even when well documented). But I HAD to. I have pictures to prove how disgusting it was, and I don't want to show you, but at the same time, you almost have to see how disgusting it was to understand. It's embarrassing when your skin is rupturing. It's your shell, your image. It implies that there's something fundamentally wrong with you. I'm trying to live as a vision of health, so when something like this happens it shakes you to your core. You feel helpless, disgusting, like a failure.

Okay, I can't do it. I can't move myself to upload the photos, or even one of them. I'm too embarrassed. Too proud. It's weird, I mentioned this to a friend a few weeks ago, that although I'm married, and fighting cancer, I still want to be seen as attractive. There's this thing that happens when you get diagnosed with a "terminal" cancer - maybe for any kind of cancer, I don't know - people love you, so they feel bad for you. They may not describe it as pity, exactly, but you get tossed into a different category. Almost ambiguous, and asexual. People see your trials, and know your struggles, what you're working with, and you become less human. Or too human. You become either too vulnerable to tease and flirt, or you become too scientific, too medical. Of course, here I am blaming everyone else, maybe it's me, maybe I'm just too serious. That I'm different. That's possible. I've talked to others though, in my position, and there's definitely a divide once you're diagnosed. People don't know how to handle us. It has to be awkward, I guess.

Regardless of all the above written word, I have to say that acne - although frustrating - is a great issue to have. Acne is fixable. Just a few weeks ago we were worrying about radiation, clinical trials, discussing what we would do if the tumor was back. And I wish I didn't care about being attractive. Dan has always found me sexy, even when bald and simple minded, that should be enough. Who cares what other people think? Right? I don't know why it isn't just that simple. Ego? That's embarrassing to admit.

Here's a much cuter picture than me, it's my father's senior class photo. Isn't he adorable?!? Man, I can finally see Kaal (my brother) in that face. Crazy how we grow into our parent's images. Pretty cool.

Monday, June 2, 2014

Quite The Impression

"Postsurgical changes of a left parietal tumor resection are again noted, including a CSF (cerebral spinal fluid) filled resection cavity, confluent T2/FLAIR hyperintensity surrounding the cavity, a loculated extra-axial fluid intensity collection, and mild stable dural enhancement. The degree of confluent T2/FLAIR hyperintensity surrounding the cavity is not significantly changed from the most recent prior study and extending back to 2013."

"Impression: Stable resection cavity when compared with the most recent prior study, and multiple prior studies without new extension of T2/FLAIR hyperintensity or new nodular enhancement to suggest tumor."

And there you have it. Unless I'm reading it wrong, it's excellent news. Now, maybe, finally, I can have a bowel movement and my acne will clear up. We still have to wait for UCLA's confirmation, but we remain happily optimistic. Any time we see the words, "without new nodular" or "without new extension" we're relieved.

All day I was a zombie. I was lethargic, felt sick. Now I can breathe, and relax, and celebrate. You never know with these things. I've felt fine in the past and had tumor growth; I've been riddled with seizures and had no tumor growth. You can't necessarily tell if you're getting sicker.

For now I don't need to know more. I don't need to think. The best day is today, that in this moment, just off the scan, we have tangible results about what's happening upstairs. I can feel confident.

I can't wait to start tomorrow anew. A recharged soul ready for more research, or a run, or my ridiculous version of yoga - or all of it. I'm fresh again. 

I'll never tire in my awe for the amazing gift of this life.

(A nasturtium from our garden. Enjoy him now because the poor guy's headed into our salad tonight.)

We're Off

Headed to the records department in a few moments. I'm so nervous to read all of those terms, the removed, scientific way that they explain my condition. This all feels so dramatic, I feel silly, then am reminded that the results determine so much. It's either a relief, or another trip to UCLA for more scans, more recommendations, more treatments, more effort.

My favorite weekend treat yesterday, family...

No more procrastinating, Dan's here to get me. Here goes nothing.

It has to be done.
Related Posts Plugin for WordPress, Blogger...
Back to Top