Showing posts with label MRI. Show all posts
Showing posts with label MRI. Show all posts

6.09.2014

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.


5.31.2014

Angels Everywhere

A guardian angel left a rainbow trail today in the middle of the afternoon. Don't see that very often. My photo doesn't even begin to do the colors justice. There was no rain, no precipitation whatsoever. I have no idea how it occurred, but it was magnificent. I've never seen anything like it. It felt alive, as it waved, and inched across the sky. A happy sailor.


According to the MRI tech this morning, we should have the radiology report on Monday afternoon. I have to head down to the medical records department at UW, and check it out, then fax it over to UCLA. I'll let you guys know how it goes. I have no inkling, no premonition, no intuition one way or another. All I do know is that it's a beautiful day, here in Seattle, and I am worn, exhausted. I am sitting, wrapped in a blanket, my feet wiggling as the sun licks my toes. It makes me deeply happy, can't help but laugh at the simpleness in this moment. 




1.25.2013

Schedule of Treatment

Seattle is as beautiful as ever today. Just finished a quick jog around the lake, and it felt GREAT. I'm still jet lagged (only got 5 hours of sleep), but I'm starting to feel less and less punch drunk.


My MRI is tomorrow at 10:30 am. I'm nervous as ever, but so it goes, I know the drill and it can not be avoided.

Here is a main run down of my trip to Germany...

Day 1
Arrived Frankfurt and took the train to Gottingen (2 hour ride on the high speed)
Spent the night in Gottingen

Day 2
Taxi to Duderstadt (30 min ride)
Checked in at clinic for blood work and met with Dr Germany

Day 3
Leukephresis (2.5 hour allotted appointment)
Met with Dr Germany

Day 4
Hyperthermia
IV of immunotherapy (each IV included 1 billion)

Day 5
recover

Day 6
recover

Day 7
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 8
Hyperthermia (cancelled due to reaction)
IV of immunotherapy (cancelled due to reaction)
Met with Dr Germany

Day 9
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 10
Shot of my dendritic cells (13 million) primed my immunotherapy
Met with Dr Germany
Took taxi to Gottingen and spent the night in hotel

Day 11
Took high speed train to  Frankfurt and spent the night in hotel in airport

Day 12
Flew home

Each time I got an IV of my immunotherapy I got a slight fever, was dizzy, and exhausted. I slept most or all of the day after each shot. The hyperthermia was not tolerable so I only did it once. It caused massive headaches - incredibly severe. It was so much so that Dr Germany stopped the treatment. He said that the most  important treatments are the immunotherapy shots and the boswellia supplements. Both are scientifically proven to shrink astrocytomas.

From here I have the following shot schedule.....(each will be administered in NYC)


2013
February 13 (with Christel)
March 20 (with Libbey)
April ?
June ?
August ?
October ?
December ?

2014
March
June
September
December

2015
April
August
December

For years after that I only have to do three shots per year.

The first year is going to be disgustingly expensive, but hopefully it will all be worth it! :) Because I'm doing the shots in NYC (not Germany) they are around $7,000 apiece. Yikes! I already have February's trip booked. Oddly, it is cheaper to get a hotel for two nights one block from the clinic and a flight than just a flight alone. How crazy is that?!? The clinic gives dates about 4-6 weeks out, so I'll need to be flexible. The shots are always on a Wednesday, that's a guarantee.

Just talking about all of this makes me SUPER excited. I can't believe I'm doing this!! I'm still working on all the financing, but I know we'll figure it all out. One way, for sure, will be a second annual cherry sale. And this time I want to be there to help out and say hello to everybody (last year it was just too overwhelming). Dan and I are really excited to join in on the cherry fundraiser. And if it goes well we might do a follow up with the soft fruits (peaches, nectarines, plums, etc.) and then finally apples. It would be a total of three fruit sale occasions. I'm getting ahead of myself here, but it's all so exciting!! I feel really good about the fruit idea because you guys get something in return. I feel very uncomfortable just asking for money. It just doesn't make sense to me. We all work very hard for our money and I'm happier when I can give you a delicious treat. Okay, enough of that. I've obviously got jogging endorphins surging through my brain :)

Cheers to a great weekend everyone, and fingers crossed for a great MRI!

10.05.2012

Possible Exclusion

When I can't sleep, I read about the success of my chosen treatments. Whether it's the results of the current dendritic cell therapy trials at UCLA (around the US, or even the globe), or the supplements and how they selectively induce apoptosis in glioma cells. When I'm afraid, I read. Last night, while trying to get more information, I stumbled upon the Exclusion Criteria for my clinical trial and right up there, first on the list, #1.......Subjects with an active infection.

AAAAAH!!!

My temperature is gone, my throat still hurts but it's getting better. I have been sitting on my bum or sleeping. This is so frustrating! The whole point of this trial is to train your immune system to attack the tumor. If my immune system is down the vaccine will not be as effective, perhaps not effective at all. I understand the exclusion, and that means I have to get my act together. Looks like I'll be laying low. I even asked Dan to pick me up a face mask for my flight. Yep, I'm going to be one of those weirdos that will be wearing a sickie mask, the bird flu kind, it's ridiculous. Oh well. Gotta do what you gotta do.

I'm sorry if I'm not returning very many texts, emails or phone calls. It's not that I don't think about all of my amazing friends - I do! All the time. It's one of the things that keeps me going, remembering all of the laughter, and fabulous ridiculousness of my life. But, it's true what they say, when you're fighting a beast like cancer you have to focus your priorities, and although I wish it wasn't the case, I have to focus all of my energy on resting and preparing for my trip. I'd rather be running the lake, going to dinner, or having a glass of wine with my girlfriends. Actually, I'd probably rather be doing ANYTHING other than preparing for another brain surgery. I can't think of much I would like to do less than a brain surgery. I only have so much energy at a given time, especially when a treatment is around the corner. I imagine it's like being a mother of young children. Your children have immediate needs and they can't take care of themselves. That's like cancer. All of a sudden, at times, everything else in your life falls by the wayside. I'm sorry that I'm not a very good friend right now. I hope that you can forgive me. I read all of my emails, text messages, etc., and I appreciate them so much, I just might not be able to respond.

On Tuesday, I got a copy of the only photo we have of Dan and I at Dallas & Kelley's wedding in Chicago. I think I'm so nervous to see what I actually look like in full shots that I've stopped taking them. I need to get over myself. It probably sounds weird, but I feel happy and healthy and I don't want to be analyzing my appearance, which I tend to do. Sorry it's a little bit blurry, Jen's daughter Kai took it :) I find it absurd that I can get caught up in such trivial things when deep in my soul I know I have a serious issue. I'm a contradiction of survival and vanity. It's confusing and embarrassing at the same time. How can a girl who has her life on the line be concerned about her looks, about material things, surface stuff, or image. I'm an anomaly to myself. I guess, in the midst of all the craziness, I still want to be a woman who's attractive and put together. To look as good as I feel.


I'm juggling a lot of things emotionally, physically, even spiritually. It's weird to ride the waves of cancer. One fabulous note that I realized I haven't shared, is that after April's MRI, my parents sent a copy of every single MRI to an independent radiology reading center. They did not get any extra information. They did not get my pathology or diagnosis. They didn't know the names of my doctors, or the treatment that they were recommending. My parents did it behind my back and just recently told me the result. The specialist who reviewed all of my MRIs said that my tumor has not grown.

I'm not sure what the deal is with the University of Washington and their radiology department. Do you remember when I talked to my doctor about how my radiology reports from the MRI readers stated that the tumor had not grown, yet my doctor and the nurse were trying to prove to me by measuring the tumor at my appointment to convince me to do radiation? What the heck?!? Or what the HELL is more appropriate. Please beware of my story. I have the top radiation oncologist at the UW who also teaches at the college and works at Seattle Cancer Care Alliance. I have no idea why there would be a discrepancy between those who read my MRIs and my doctor, but something is very fishy. I'm just grateful that I did not listen to my doctor. My brain would have been long fried and who knows how badly that would have turned out. I'm not necessarily against doing radiation but I would want to do it as a last resort. If my protocol is working, why beat a sleeping monster with a sledgehammer. Just tranquilize it.

So far, from October to April I was able to stop the growth of the tumor. I skipped the MRI in July due to the attack, so six months will have passed when I have my MRI on 10/15/12. Hopefully, I've been able to continue the trend, maybe even reversed it some. Anyway, I just wanted to share that information about the MRI readings. It is so important to analyze the information. It is imperative to get copies of all of your reports and look at them yourself. And if something doesn't sit right, pay the extra money and get an independent review. The worst case scenario is that you might be wrong. That you should do what your doctor is telling you. That you might be back at step one and out a little bit of money. But so what. At least you'll know that you checked your bases. Be strong, and follow your gut. Take whatever little energy you have and put it toward advocating for yourself. Don't just follow the cattle chute. You are the only one who can find the best cure for your body. There are so many successful treatments and there is no doctor in the world versed in all of the options. Be your own general manager, please don't be afraid of taking charge, and sometimes that means giving leniency to those on your team. Back in April I told my parents that they could solicit reviews of my case from other sources, I just didn't know that they were going to go through with it :) 

Thanks mom & dad for doing that review behind my back. If you have someone who can take the hits for you, double check things, etc. it's nice to not have to field the blows all the time. If the news was bad I would never have to know, but since it was positive it ended up being a gift. They knew that I wasn't going to do radiation anyway at this point so they felt no need to stress me out or fire me up right away. They waited for the right moment, once my mom had a martini in her :) She and I are open books that way. So there you go. A huge blog today, I guess I had a lot on my plate and it feels good to get it out. I fly out on Monday, and on Tuesday morning I have my Dopa PET scan to make sure that I actually have tumor tissue not just scar tissue. Let hope for a miracle! I probably won't know the results until the 16th. Of course, I'll let you know as soon as I can. Love to you all!

9.13.2012

The Pleasure of Being Alive

I'm on hold with Jet Blue, figuring out flights. I still don't know when I'll be able to fly back home, but I'm paying for refundable tickets so it should all work out. I booked different flights for Dan already too, and that makes me really happy :) Dan's taking some time off for the surgery and recovery. It's a huge relief that Dan will be with me. He makes me laugh, nurtures me, and puts me at ease. I don't know if you guys remember, but after the last brain surgery, Dan would scoop me up and put me into a bubble bath. He would gently shave my legs and armpits. He coordinated over 80 pills daily, all of them falling at different intervals, even through the night. Dan did not sleep unless I slept, and even then he was so worried about me that he would be taking care of things around the house like food, or laundry, or just laying there softly cuddling me. I never thought I would be as lucky as I am. I never thought I could love someone this much. He's the most gentle and kind human I have ever met. He's amazing. This whole thing is crazy, but I'm becoming more and more ready, not only with the planning but also emotionally.

This is an amazing opportunity. It's the treatment that I wanted, with the best results. Originally, I was going to fly to Germany and do the same treatment. The only difference is that they were going to try and use my old tumor tissue, the one from 2.5 years ago. The problem is that the tumor tissue can morph. So, to have the best success rate you need the freshest tumor tissue. This clinical trial fell into my lap. It landed via email from my brain tumor fighting buddy Jessica. I had written off the trial because I thought that I had to do chemotherapy or radiation - or both - in order to participate. And now, here I am, I'm included in the trial, with the possibility of the absolute best results (I've read that the German treatment is 20% less successful). This trial does not come without costs. There's the cost of the brain surgery, hospital stay, all the medications, all of the scans (MRI, fMRI & DopaPET), all of the testing (pre-surgery language tests, cognitive tests, & surgery clearance), in fact I can't even think of all the costs at this point. The only thing that is free is the actual dendritic cell shots, of which there will be three. And, above the financials, there's the physical cost. We will not know the true amount until after the brain surgery has commenced. I won't feel comfortable until at least 48 hours after the surgery. Last time, I was fine when I came out of surgery, but within 24 hours I started to deteriorate. That's when my duramater peeled from my skull and a blood clot formed in the tumor cavity, and that's why I had to have a second emergency brain surgery. I'm keeping my fingers crossed that I won't have the same complications, or any complications for that matter!

I have to run out the door, literally, to a hair appointment. My final trim and tint before the surgery. I'm opting to keep my hair, although they have to shave it in certain areas. I'm hoping to do a Donald Trump comb over :) We'll see how THAT looks. I might get sick of the crusty blood in my hair and the scab could prove difficult in that birds nest, but it's worth a shot. Yes, hair does grow back but unless you've shaved your head you don't understand what it's like to be bald and to deal with the horrible phases of grow-out. It's something I'd rather not experience again. I probably sound silly, but there are things that you can control, and there are things that you cannot. I like to control my hair. I like having the option of wearing it curly, or straightening it, either way at least it's there :)

Could you guys do me a favor? Could you please, after you read this, choose to go for a walk, or a jog, or do a push up, take the stairs, park further away from your destination, and then take a moment to thank your legs, your feet, and your body. After the brain surgery I will not be able to run for quite awhile. I will not be able to get my heart rate going or it will cause headaches and such. It will take time for me to heal, to ride a bike, to hike a hill, to push myself. Over the past 24 hours I've ran 14.5 miles because I'm so grateful to have the option. I've been jogging around the lake, the neighborhoods, like a complete goober smiling at the dog down the street, and his neighbor the calico cat whom I respectfully named the mayor of Green Lake. I'm breathing deeply, enjoying the pain in my muscles, soaking up life. Please join me by doing something that gets your heart going. Please take a moment to thank your body. Please take a moment to truly enjoy being alive.


6.30.2012

To Knife or Not To Knife



Yesterday, I walked a couple of loops around Green Lake with my friend Lauren. On the way to meet her (she lives in Green Lake like me so we meet half way), I saw this gorgeous dahlia. I mean, I think it's a dahlia. It was misting, and every plant had mother nature's glitter. It was a beautiful morning, a great day to be alive, to be healthy, to be able to walk and explore and laugh and talk. The possibility of another brain surgery reminds me of all the trials I worked through before. The first two brain surgeries were incredibly hard on me, and the recovery for months and months and months were horribly trying. But, I got through it. At times I didn't know if I'd get better. I didn't know if I would ever get my speech back together, find the words that I wanted to communicate with, my phonetics and word finding were in pieces. I didn't know if I would ever read again, or once I was able to slowly read aloud, like a child just beginning, I didn't know if I would ever be able to understand those words.

Any fears I might have about undergoing another brain surgery are definitely founded, but it still shouldn't hinder me from moving forward with a successful treatment. I used this analogy with a friend yesterday when she was picking up her cherries (thank you!), I want to hit Herman with a firing range. I want an arsenal to beat this tumor, hit him from all angles, give him no reprieve. Technically, according to the research, it's possible to cure my type of tumor in rats with various high dose supplements, and of course, our friends have already stopped theirs. But, I haven't been able to ingest the amounts that are necessary for killing doses like my friends did. We think that we're winning the fight, that the smaller amounts that I take might be holding Hermie at bay, or perhaps even reversing some of his growth, but the MRIs have not been definitive. In fact, my oncologists, and the radiologists, believe that Herman has continued to grow progressively. In order for me to be comfortable, I need to see more serious results.

At this point I take 29 pills in the morning, 24 pills in the afternoon, 48 pills in the early evening, 8 pills shortly after that, and finally before bed I take 6 pills. Most of them must be taken with whole milk so I'm tethered to a refrigerator. It's exhausting to keep up on the schedule, and I'm sick from swallowing all the pills - not to mention the fact that I feel like a cow. Literally. I find that on most days I don't even leave the house. The supplements may take years to heal me, and I need to keep on them in order to stay in front of Hermie's growth, to hold him back. It's a lot of work. If I go through with this clinical trial I might be able to aide my immune system to fight Hermie on my own. My body might be able to clean up the tumor, and heal itself. I could still take the majority of supplements, or all of them if I so chose, as my immune system also went to work. It would be an arsenal against Mr Herm. What's better than that?!?!

I'm scared to do another brain surgery, I think I've made that blatantly clear, yet I'm excited for the possibility of a personalized tumor vaccine. The freshest tumor has the best chance for success, so the surgery truly is necessary to be the most effective. Bad things can happen during surgery, I'm proof of that, and I'm actually very fortunate because I recovered from most of the ill effects of my brain surgeries. Some are not as lucky. But, this treatment could also heal me. It's a gamble, and we won't know if I'm a winner unless I go through with it and see what happens.

5.10.2012

Building Confidence


This is the view from the house we rented in Kauai. The trip was fantastic, hilarious, refreshing, and unbelievably memorable. But, now I'm back, and I need to figure out what I'm going to do next. Sometimes it feels impossible to sift through the different random treatments (high dose IV vitamin C, IV curcumin, hypertermia, oxygen therapy, dendritic cell therapy - need to see if UW has stored tissue from my tumor, etc.), and it's overwhelming to evaluate clinics to make sure that they're full of honest, trustworthy people. Cancer is a billion dollar a year monster, and there are many a snake oil salesmen. At times, I feel like I'm spinning in circles, engulfed by people with all of the newest cancer cures, telling me to drink $32 dollar per 36 ounce salt water that has been ionized (or something like that), drink 6 ounces four times a day and I should be cured within 6-9 months. Seriously, a guy told me to do that. He didn't even know the type of tumor I'm fighting. I'd bet that most people honestly want to help, but still, it's just too much information. I can understand why people decide to just do the standard of care.

Just as a side note, at the appointment with the radiologist on Thursday, when we went to thank him, the guy said, "No problem. I'll gladly help my colleagues to clarify and aide further treatment." So, at that appointment, Dr F (the radiologist) had an agenda to get me on board to do radiation. His job was to convince me. I feel like I can't trust these people. He also said that the other radiologists haven't been accurately reading my last few MRI scans. What the hell?!? Who do I speak to about that? I have to pay these fools. Do they know that they're playing with my life? This isn't a salad recipe, you can't just do whatever you want. This is more like a souffle - I could completely implode. Do they have no humanity? Or - is Dr F just saying that to get me on board? Who do I believe? And if they have been half-assing my reports, I think I should get a refund! I pay these people just under a couple of thousand dollars a year. I just received a bill, so I know what I pay out of pocket. After insurance, a reading of my MRI is $438. Now, I get four of those a year....so.....that's a lot of dough. And that's just the bill for the radiology reading.

My doctors sure are pulling out all of the stops to get me under radiation beams - even though for my specific tumor it will not extend my life. I've been confused about the whole agenda. It has never made sense, until yesterday while I was researching alternative options. I then confirmed with my mother, and radiation, depending on the type (whole brain, gamma knife, beam, how many beams, how many weeks, etc.) is between $200,000 - $400,000. The co-pay is $20,000-$40,000. Are you kidding me?!?!? If I'm going to spend $20,000-$40,000, I'm going to spend it on treatments that will give me more time. It's ridiculous.

I still don't understand what's happening with my artemisinin treatment. I can't seem to figure out why the two smaller areas are shrinking, yet Hermie grows. There is a chance that the artemisinin is shrinking the tumor in the way that it grew out, reversing it back to the beginning, but it's scary to risk my life on the unknown. Danny and I have gone over and over, trying to figure out what we're going to do. There are some pretty amazing clinics in Germany, and a couple in Mexico. But, it's a huge commitment to research these clinics, and it's scary. It's a big leap. But, as a friend said, "Time is life." So, instead of continuing the low doses, we've decided to start the chemo drink. My friends who eradicated their tumor, used the chemo drink, ingesting it every evening for about a year and a half, then they switched to the artemisinin. At which point most of the tumor was gone.

The drink is incredibly labor intensive. It takes about three hours to create, you have to blend things together, then cook it at 100 degrees perfectly for a long time. It's going to be incredibly tough, but it's worth a shot. This isn't something I wanted to have to do, but I have to take major steps. I can feel the tumor in my brain growing. Even Danny has been continuously noticing my deficits. I've become more frustrated too, while trying to communicate. It reminds us of when I was trying to get better after the surgeries. The worst is when I'm incredibly exhausted. I've started stuttering some, and I can feel a disconnect between my thoughts and my mouth. There's an odd delay. I'm sure that others wouldn't notice the difference since they're not around me day and night, but it's something that Dan and I notice, and we're both scared.

I feel like I need to take drastic measures to stop the growth before I start to lose my reasoning skills. I don't want to have to step aside in my active roll of care.

For now, I'm sorry for the lack of email responses, or contact with friends, but I'm completely overwhelmed. I have a serious job to do and social stuff is going to be put on hold. Thank you understanding and sending the love, support, and the prayers - I appreciate it so much, and I truly need it. After Thursday's appointment with the radiologist, my sleep has been full of fitful bouts of jactitation (learned that while reading the dictionary with Katie Jarman). I wake up in the middle of the night with my heart racing, my body breaking out in cold sweats, even in Hawaii. Last night was the first time I finally calmed myself down, and managed to slow my fear. There had been a visceral reaction to the radiologist's dictation about my scans. It filled me with fear, and for the first time, I truly realized that I might actually die. I knew that this brain cancer could kill me, but I had never absorbed the concept. I now, truly understand and it's a horrible, horrible feeling. I don't think I was in denial, I think I was just hopeful and optimistic. Now, I struggle to keep positive. Last night, laying in bed, all I could to was continue my mantra, "I'm healthy and I am strong." But, I'm definitely trying to convince myself, and build my confidence, and I'll tell you what, it's incredibly hard. This is scary.

5.03.2012

Hermie is Winning

The appointment went in the worst scenario possible. They proved to us that the tumor has been consistently growing. The artemisinin does not appear to be working. We all feel completely deflated. There was crying from each of us. I don't even know how to process this information. I am not winning the battle against Hermie. The radiology reports that had been showing the same measurements at each MRI, had been haphazard and the doctor apologized. He said that he's seen that before, even to one of his family members who has a low grade glioma like me. He said that there are MRI reading specialists all in a room, going case by case, and that they're overworked and they can get sloppy. That they don't always review all the way back a few MRIs to truly compare. So, basically, those reports, which we had been banking on, were bogus. 

The worst part is that the way the specialist reviewed all of the MRIs in front of us, showed that the artemisinin does not appear to be working. It should have been causing Hermie to shrink, which he hasn't. I need to regroup and think about what we're going to do next. 

Perfect timing, my Wenatchee girls planned a long weekend, gifting me with a trip to Kaui. So, tomorrow morning I'll be flying out with Kristin, Michelle, Jessaca and Jenny. These girls always cheer me up and fill me with hope. They're exceedingly intelligent, too, so I'm sure they can help me figure out what to do. 

I am so deflated, and scared. And now I am beginning to understand why so few people survive this cancer. It's vicious, tenacious, persistent, and effing strong. I just have to figure out how to outsmart it - and apparently, it's not going to be easy. 


Thank God for the baby ducks.
There's always something beautiful to find, even when you're down.

4.30.2012

Too Large? Too Dense?

Man. What a week. I've been a busy bee. Happy second anniversary to us...for the brain surgeries, that is! April 27th and 29th (which also happens to be my mom's birthday - yay for mom!). Last Friday, I jogged over to the UW hospital to retrieve my most recent records from my MRI. I always get copies of the actual scan, and then I also get the radiology report which shows the analysis by the radiologist experts. It's important to get copies of the reports because they are constantly contradicting my nurses and oncologist. It's incredibly confusing.

For example, at the main appointment after my MRI, my oncologist haphazardly pulled out measuring instruments to compare my current MRI on April 19th, to the tumor scan in January, during which he showed a couple of millimeters of growth in a couple of directions, telling us the tumor was progressing. But, according to the current radiology report, my tumor measured the same exact size of 10 mm x16 mm x 11 mm.

What gives? Are the nurses and oncologists uneducated in accurate MRI measuring techniques? If so, maybe they shouldn't be interpreting the results in our meetings. Maybe they shouldn't be inferring results and determining treatment until they receive the official radiology report. According to the current report, there is slight growth, however the measurements have not changed. I'm not sure why they would say that there has been slight growth, and yet the measurements have not changed. We were so confused that my parents contacted the hospital so that we could talk to a MRI reading specialist. For the record, this is not a typical or usual occurrence, and it is not encouraged - but my family is persistent. I think most people don't analyze their MRIs quite as deeply as we do, but I think people should. On Thursday morning we'll be meeting with a fellow who constantly reads brain MRI's. We're hoping that he can explain why the measurements have remained exact over the past six months, over three MRIs, and yet they're saying there's growth. We're not arguing because we can see the slight changes, but we're confused as to why the measurements haven't been adjusted.

I am baffled by the contradicting interpretation of the measurements of my brain tumor. Is it really that subjective? It doesn't seem right. They're trying to tell me to do radiation and fry my brain, yet even the doctors and specialist within the hospital aren't on the same page of what we're dealing with.

It is imperative for patients to get their medical records and review on their own. Not only before you enter a treatment, but also because doctors will say there's "no new growth" when that actually means, "not much" or a few millimeters. That's what was happening to me before October of 2011, and that is a serious problem. Let me tell you why: If your tumor is growing, but you aren't aware, you don't know that you should be looking into treatments. According to my bioengineering artemisinin guru researcher friend, there is a point when a brain tumor can be too large or too dense to treat it safely with artemisinin. When he told me that, I almost vomited (he wouldn't have known - we only talk over email). It never occurred to me that the artemisinin might not work. It all started unravelling when we noticed that the three other areas of concern continue to shrink, and yet Hermie grew just a bit. I asked the guru, one of the top artemisinin researchers in the world, and he said that if the area isn't shrinking like the others, it might be too large or too dense to eradicate with artemisinin. AAAAAAAAAAHHHH! Seriously? That never, ever occurred to my simple, hopeful mind. I thought I just needed to find the correct dosing.

So, what have I learned? Well, if I would have been reviewing my MRIs ever since my surgeries, I would have seen the changes in growth, and I would have been able to start the artemisinin treatment to treat my brain cancer. EEK. AAAAHHHH. I'm so frustrated with myself. I realize that it was an innocent mistake, that I didn't realize how much I needed to be on top of my care, but that doesn't fix the problem of possibly missing my window. We won't know for sure until the next MRI on July 19th. I'm not going to lie, the idea of this treatment not working is absolutely terrifying. I'm not willing to give up though, and, deep in my heart I truly believe that it WILL work, but jeez. This is scary.

To change the subject, here's a photo from the weekend that should make you laugh. Danny, Eric (Dan's brother), Christel (Eric's girlfriend), and I went to the Huskies spring football game, and we came upon photos of the two players of the jerseys that Dan and I wear at Seahawks games. How crazy is that? Just another sign showing that we're a match made in heaven.


4.25.2012

Goin' for "Stable"

In the picture below, you'll notice more of Larry's fresh garlic. It's delicious, but my breath is ATROCIOUS. Luckily it's just Emma and I today, and bad breath is her favorite.



This morning, I woke up rested. I had the chance to debrief with Meghan over the phone last night. We laughed, and I cried a little bit, told her my fears, and if I heard correctly, I think she might have dropped a tear or two as well.

All in all, I feel like this is going to work; the low doses make me feel so good. Also, this protocol is great - absolutely doable. I enjoy having my last meal at 4:30 pm, then cleansing my body with only water until pill time at 8:30 pm. It takes a serious amount of discipline, but I enjoy the challenge. Oddly, it makes me feel strong. I like routine, things that I can count on. I like knowing that antioxidants are for breakfast and lunch, that every day is the same. There's no guessing, no worries, just the basics, every single day.

I'm scared to see growth, albeit minimal. I worry that somehow I won't beat this. I fear that I will continuously decline, and that this tumor will invade and take over my brain until I am no longer functioning. Those are my fears. And, if I look at the majority of cases, it's exactly what happens. BUT, I have stopped Herman's growth before, so I know that I can do this. I know that it can happen. AND, we did shrink the other areas of tumor. SO, who knows. We just have to stop Herman's growth. I'm happy - not thrilled, like I probably should be - that the other areas are smaller, but as long as Herman is growing, he's a major threat and that rains on my parade.

Herman needs to be taken seriously; he's a formidable adversary. So, here we go again, another three month period to conquer this challenge. Herman feels angry, like I've been trying to keep him down, and he's pissed. I just have to keep the low doses of artemisinin coming each night, tucking little Hermie to bed with my own version of a bedtime story.

It's weird to live like this. To be a functioning young-ish adult living with cancer. My life would not be as easy if I would have followed standard of care and done radiation, so I can be grateful for that. I can't imagine all the effects I would be dealing with. Yuck. At the doctor appointment, my mom asked when they would stop pushing for radiation, and the response was: I need to get two more MRIs with minimal growth to be considered "stable." At that point, hypothetically, I would have an entire year of minimal growth which would put the radiation discussion off the table. They would continue to monitor but not push for radiation. So there you go, that's our next goal. We not only want to stop growth, and have it shrink, we want the doctors to stop pushing radiation.

But, I'm getting ahead of myself. For now, I just need to go run green lake. My goal today is to jog two laps at once (without stopping), that adds up to be approximately 6 miles. I have never accomplished that feat before, but I need to challenge myself. Hermie and I need to have a run and a long talk. It's going to be wet, but I think Herms has pretty good hearing and can decipher my words through the wind and rain drops. He's already getting pouty. He knows he's in trouble.

4.24.2012

Eating Away at My Core

My adorable little nephew


Well, I tried the higher doses of artemisinin, and it appears as if my body didn't prefer it. According to research, there's quite an individual variability of effectiveness. So, last night I started back on the low doses of Artemix. I'm back to doing the same protocol from Oct - Jan. I'm back in contact with the lead researcher at the UW who knows all there is to know about the artemisinin derivatives. He's originally from India where he was a medical doctor, but he moved to the states and earned a PhD, and he now researches artemisinin. He is the most kind doctor and researcher, possibly in the world. I emailed him and discussed what happened with this latest protocol and he expanded on the reasons why the low doses work so well. There's a 24 hour cycle where you eat antioxidants in the morning and at lunch, then refrain and stop eating in the early evening. You then take the artemisinin four hours after dinner with a cup of whole milk. Then you start back over in the morning with antioxidants. By utilizing the 24 hour cycle, you keep your body healthy and it cleans up any residual damaged cells, then when you take artemisinin on an empty stomach, the body creates more free radicals which allow the artemisinin to attack the cancer cells. The artemisinin works its' magic while you sleep and when you wake up, it's time to clean up all of the mess. I'm excited to be back on the low doses, it's so much easier.

It's crazy, but I never liked the high doses. It made my innards hurt. I'm disappointed that Herman grew, but I'm not surprised. I had been noticing some mental deficits, nothing too serious, but things were different up there. I didn't want to jump to conclusions because there's just no point in freaking out, but when I saw the further infiltration of Herm on the MRI, it all made sense. The growth is in my speech and language area, and although I feel like I'm progressively better at expressing myself with the written word, the deficits are when I'm speaking aloud, or processing speech. Tricky stuff. I still don't think anyone else would notice, but I notice and that's creepy enough.

The past twenty-four hours have been pretty tough. My family all returned to Friday Harbor and Wenatchee, and that's when the whole thing hit home. Here we go again, another three months of trying to stop the growth of Herman and hopefully, someday, actually see him shrink. Yesterday, as I was laying in bed trying to nap, I wondered if I was going to be able to keep up the fight. This is exhausting. Sometimes I feel like giving up. I know that I won't, but it's so tough. Luckily, my friends Meghan and Nicole invited me to run the lake. If not for that, I probably would have just laid in bed. I just need to keep one foot in front of the other, and do what I can. At least today I get to visit my friends at the retirement home, they always make me feel better and it's a great excuse to get up and out of the house.

It's so foreign to have a blob growing in my brain. And to feel it, recognizing that it's there and it's eating into who I am, deep in my core, my thoughts and processing, it's absolutely fascinating, and horrible, and terrifying.

4.21.2012

Ahead of Ourselves


Yesterday, my adorable little niece and I created our morning green drink. We added a banana, and then stuffed the blender with handfuls of kale. Then, poured some water in the base and Isla flipped the switch. We watched the drink swirl, and as it chopped, I pulled orange flavored fish oil out of the fridge. I love young children because they don't have any preconceived notions. She never said, "Gross! Fish oil?" like an older child might have. I unscrewed the top, sniffed it, and said, "Yummy! Smells like fresh oranges." I passed the glass over to Isla, and she agreed. When the drink was finished blending, we poured it into a large pint glass, adding two tablespoons of the fish oil. We stirred it together and tried a taste. Isla loved it, so I poured a glass just for her. If you look closely in the photo above, you can see the green goo on the sides of her mouth.

It's always fun hanging out with Isla. She's adorable, and hilarious, always willing to try new things. I'm incredibly disappointed that Hermie grew. The day before the MRI, Danny looked at me, smiling, and asked, "If the MRI is good, how many good MRIs will it take before we can make a baby?" Obviously, we were getting ahead of ourselves. That's hard to swallow.

Also, I should clarify from the previous post that my doctor does not agree that the tumor areas are less dense - that is just our opinion.

4.19.2012

Chubby Hermie

Other than the growth of Hermie, the meeting went relatively well. The oncologist listened to our protocol, but as he was nodding, we realized that our protocol doesn't matter. I could have inserted the name of any treatment and he wouldn't have cared. He had already looked at my scans and determined that little Herman had grown. He didn't care about the three other areas which had visibly shrunk. We are incredibly bummed that Herm grew, but the tumor cells are less densely populated, and we're looking into two new institutions for further review. We're also going to contact the researcher who tackles artemisinin to see if he will comment on the scans. We're hoping that he will expand on the typical growth patterns of tumors treated with artemisinin. In reviewing the subject, my family and I recall the possibility of the tumor expanding before it gets smaller. Here's a couple of photos for your review. 

Oct 2011 - Jan 2012 - April 2012

After the MRI, but before the meeting with my oncologist, I went to the records department and had a tech burn a disk of my MRI. We brought all of my previous disks from all of my other MRI's and we reviewed them on my father's laptop so that we wouldn't be blindsided during the appointment. It also makes it easier to figure out any questions we might have. The doctor has no idea that we did that. He never knew that we had already reviewed the scan. I don't think it matters though - he doesn't have to know EVERYTHING.

April 2011 - Oct 2011 - Jan 2012 - April 2012

After the appointment, we mailed off a copy of the scan to our friends who have already beat their cancer, then we headed to my parent's hotel. We pulled up all of the scans, and analyzed to our heart's content. We looked at them with the lights on, with the lights off, from a side angle, from above and below. We zoomed in and we zoomed out. It's important to really go through this stuff with a fine toothed comb. Our oncologist is very busy, he doesn't have the time (only 30 minutes) to review everything, so recently we started conducting our own reviews at home.

My oncologist is not impressed with my protocol, he feels that I still need to start doing radiation. He said that the growth was minimal, but it is still growth. He doesn't care that in the past six months there has been barely any growth, he's concerned about the past year of scans. I understand what he says, but at the same time, all we care about is the past six months - that's the time frame of the artemisinin. I told my oncologist that I'm not ready to give up, that I'm going to do three more months of artemisinin.

Today was exhausting and I need to go relax. We just got home and I need to put my feet up. It's a bummer that Hermie grew, but at least his friends are shrinking. All in all, at least Herms isn't growing exponentially. It could be a lot worse, and I'm grateful. I'm sad that he grew, but I know that this isn't over!

4.18.2012

Transparency

Last night, Danny went with his college buddies to bottle their personally crafted beer at a local brewery. Left to my own devices, I whitened my teeth, mudded my face, and ate a pound of strawberries. I don't need to say much about the latter choice, other than it was excessive and thirty minutes later, I immensely regretted my over consumption.


I'm anxious for the MRI tomorrow morning. I realize that what is done is done, that whatever we see is what we see, but I can't help but be nervous. I wish I could just let it all roll off my back, and live my life, then show up at the hospital and finally worry. There's no point in stressing about the results, and yet, it's impossible to avoid it.

In my semi-stressed state, I've been reading a couple of books written by doctors. One was the book titled, The Anatomy of Hope, and then the most recent is Routine Miracles. Both are giving me a better perspective of a doctor's position in patient care. It has prompted me to reorganize my appointment. Let me expand.

I've decided that I need to discuss my alternative treatment with my oncologist. Not in the glossed over fashion that we've attempted in the past, which has caused us to be brushed off. I need to get more in depth and I believe that since we've always met with my oncologist as a group, my parents, Danny, and I, our large presence limits intimacy. So, tomorrow, Danny and I will meet privately with my oncologist and explain everything that we've been doing, starting from the beginning.

We will explain that we've been doing a researched based protocol. I'm going to tell him that the research has been conducted in the Bioengineering Department right here at the University of Washington. I will tell him that we're in contact with the researchers, and that we have a friend who has already eradicated her tumor with a combination of said treatment. This friend had the same exact type of brain tumor as mine, a stage 2 infiltrated/diffuse astrocytoma, even down to the lack of co-deletion of p19-1q (he will recognize the importance of that statement).

I'm going to tell my oncologist that this protocol is not invasive, it's cheap, and relatively speaking, it is without side effects. I'm going to tell the doctor that I need an oncologist that's willing to follow my situation, and understand that I am a unique case. I want someone who is on board, and excited about the progress and fortitude with which I'm going to fight this. I'm going to feel out this oncologist and see if he truly wants to see me cured with any type of treatment, or if he is more interested in western medicine's standard of care. My case is definitely out of the box, and I'm going to tell him that I'm looking for a teammate. By having this honest and open dialog, I think I will find out whether or not I will keep him on my team. It's all about how he responds to this discussion.

I'm excited and nervous to have this talk. I think it's about time I gave transparency to my doctors, but I also understand that it could go horribly wrong. It's a risk that I'm willing to take, though, it has to happen so that I can get the best care. They need to know what they're dealing with, and I need to give them the opportunity to truly help.

After Danny and I discuss my situation with my oncologist, we're going to call in my parents so that we can all review the MRI results. I feel like the first half of the meeting needs to be intimate, and private, so that the oncologist isn't overwhelmed by all of our faces, expressions, questions, etc. I want to look in my doctor's eyes and have his full attention. I am going to lay it all out on the table, and analyze his reactions. This could be an epic success or a tragic failure. Either way, in life, I'm reminded, you can't be afraid of the answers because it's the only way to move forward.

4.16.2012

Prevailing


We have a beautiful courtyard just outside our front door. Danny and I have shared games of scrabble, cocktails in the dark with our neighbors, and on Saturday afternoon, in such a happy place, I stretched out with my new book, The Anatomy of Hope: How People Prevail in the Face of Illness. It's a perfect find, just as I'm nearing my Thursday morning MRI. Here are a few of my favorite quotes from the book:

      "It was my right to choose what I did. Even if I didn't prevail - and I didn't expect to - it was my only chance. I deeply wanted to live, so I had to fight. Then I could tell myself that I had tried, that I had done everything possible. There would be no regrets." 
      His was a libertarian mind-set, one that placed the individual squarely as the ultimate arbiter of his fate. It represented a certain form of hope - the hope to be strong enough not to yield, to have the determination and the fortitude to fight.

Another favorite....

      When we feel pain from our physical debility, that pain amplifies our sense of hopelessness; the less hopeful we feel, the fewer endorphins and enkephalins and the more CCK (important regulation factor in response to anticipatory stress) we release. The more pain we experience due to these neurochemicals, the less able we are to feel hope. 
      To break that cycle is key. It can be broken by the first spark of hope: Hope sets off a chain reaction. Hope tempers pain, and as we sense less pain, that feeling of hope expands, which further reduces pain.

One more, which happens to be my personal favorite. I wish my oncologist and his team would read this...

      We will likely discover genes that contribute to the very complex feeling we know as hope, but the circuits in the brain that stem from this feeling are not static. Rather, events in our lives modify them, and I would posit that the words spoken and the gestures made by physicians and surgeons and nurses and social workers and psychologist and psychiatrists, and family and friends, influence the synaptic connections. No one should underestimate the complexity of factors that coalesce in this biological process.

In order to succeed in healing myself, I have created an ever changing bag of tricks. Sometimes it's a walk along the lake, or a jog with a friend. Other times it's trying a new healthy dinner recipe, or a vegetable smoothie, or perhaps a micronutrient dense juice. Inspiring books, or personal stories, have also been a wonderful catalyst, changing my whole mindset and energizing me to continue the fight. It's important to find the things that inspire you; it's imperative even, to not only survive, but to thrive.


4.12.2012

Problem Fixed

Success! I received a phone call and my neuro-oncologist will meet with us one hour after the previously scheduled, then cancelled, appointment. I feel guilty for having to be so straight forward and direct. It's frustrating to feel guilty about wanting an appointment with my oncologist. I don't enjoy being forceful. A girlfriend who is also dealing with brain cancer gave me solace though. She said that she's never been bumped by her doctor, that at each MRI review she's met with her doctor - not the doctor's nurse (different hospital). And that she would be upset if she was in my position.

I've been bumped at least three times that I can remember. The most memorable was in October. We met with my radiation oncologist's nurse, she reviewed my MRI and said that the tumor looked great, that she wasn't sure if there was any new growth or not - there was an area of concern, but it could be the positioning of my head during the scan. The nurse said that my oncologist would call the following week with the final results. Unsatisfied, my mom pressed on and said, "Is there any way to meet with the doctor?" That's when we headed over to Harborview's Gamma Knife Center, intent on sitting in my radiation oncologist's office until he would meet with us and answer our questions. It turns out that there was significant growth, and when we met with my radiation oncologist, he wanted me to immediately start radiation, the very next week. If we wouldn't have pressed on, and would have instead gone home after the appointment with the nurse, my family would have gone back to Wenatchee, Danny would have been back to work, and I would have been at home when I received the phone call with the horrible news that they wanted me to start radiation. That's not something you should have to hear over the phone. It was a massive eye opening experience, reminding me that I have to stay on top of my care. I'm lucky to have a team, my husband and family, and there's definitely strength in numbers. Follow your gut, and don't be afraid to voice concerns. It's sad that you have to stand up for yourself, but it's the medical world that world we live in. 

Either the University of Washington's neuro-oncology department is understaffed, overwhelmed, masters of double billing, are out of touch with their patients and their feelings or maybe they just don't take cancer very seriously (which I doubt). Maybe it's a little bit of all of the above. Oh well. It must be irritating for some of the nurses and doctors, I don't believe that they're heartless, but there's a bottom dollar and currently my hospital has a bad system, that's for sure. 

On another note, here's a new recipe that I made us for dinner!

Dinner


Lacino Kale Salad
10 large kale leaves, thickly shredded
1 cherry pepper finely diced (you can chop a few of the seed to add some spice)
pine nuts to taste
romano sheep cheese to taste (I zested ours, but you could grate, or it however you want)

Toss the above ingredients (except for the cheese) with a mix of olive and sesame oil, the juice of one squeezed lime, and fresh cracked pepper. Dish up, and zest some romano on top.

On a side note, has anyone else ever noticed that lacino always has a bunch of little bugs in it. They're like little aphids or something. I wash each leaf by hand, pulling the little bugs off, but it's gross. I don't think I can continue to eat it. Any suggestions before I complete give up?



4.11.2012

Juggling Act

I am so incredibly frustrated. This happens lately with each reoccurring MRI, they juggle me around, calling the week prior to change things. They change up my appointments, cancel on me, or switch me to see nurses instead of my doctors, and it's incredibly frustrating! They don't even ask! We schedule my MRIs three months in advance. My parents take time off of work, travel to Seattle to be with me, and Danny takes time off of work.

This time, at the last minute (I still consider a week to be last minute in these trying times), they called to tell me that my neuro-oncologist is no longer going to make my appointment, and that I will be meeting with his "very knowledgeable nurse." I believe there are nurses that know much more than doctors, but in the past, my experience has not been good. Each MRI appointment that was held with a nurse instead of the oncologist has been riddled with bad information. I'm sick of meeting with a nurse, then having to come back to meet with the doctor to get my questions answered. I'm done paying for multiple appointments. It's unnecessary. I only want to talk to my oncologist. If I can't meet with my oncologist, I might as well just get the MRI and review it myself. The nurses always have to refer to the doctor to get my questions answered anyway, as they are very technical - or if you recall during the last MRI review, the nurse said my brain tumor was growing significantly when it actually remained the same exact size (10 x 16 x 9). I'm done with the roller coaster of misinformation. I realize that there will be errors, that medical professions are human, but I'm not going to pay hundreds of dollars to someone who may or may not know what they're talking about.

As a patient, I am a customer. I have hired my doctor to provide a service, which is to review my MRI with me and answer any questions I might have. It is irresponsible to cancel a meeting, and contract out the job to a less qualified (although surely nice) person. This cancer patient seems to get pushed around by her doctors. I hope that I'm the only one. It's overwhelmingly frustrating, right in a time when I least need more stress.

I left a message for the nurse who cancelled the appointment with my neuro-oncologist (she did it over a voicemail no less), letting her know that, "Yes, actually, I do have a problem meeting with the nurse practitioner, it's not personal, but I've hired the doctor to meet with me and review my MRI. My family is traveling from out of town, they've reserved hotels since I can't accommodate everyone. My husband has asked for time off, and in this economy, that's risky. We anticipate these appointments and take them very seriously; this brain tumor is our whole life, everything revolves around these appointments. I realize that the doctor has different priorities, but this cancer is incredibly overwhelming and I wish we would be shown a little more respect. We are willing to meet with the doctor any time throughout the day, surely there's a few moments when he can squeeze us in and honor our appointment."

If my new (yep, he's my new guy - I've only met with him once) neuro-oncologist is too booked up to meet with me, they shouldn't have allowed him to take me on as a new patient. I realize that I'm probably annoying since I'm very hands on, and that I always come with all sorts of questions, but I take my health very seriously. I mean, think about it, I've been told that this cancer is going to kill me, that I should not have children - I'm basically in a holding pattern, waiting for the next shoe to drop. I am astounded that this is how they treat someone who is fighting for their life. Although I do a lot of research about my cancer, my options, clinical trials, western, complementary and alternative treatments, etc., I also want to tap into the brain of my neuro-oncologist to answer my questions. I have a few non-negotiables: I will not over pay, or get double billed anymore (like an appointment with the nurse just to have to make another appointment with the doctor to get my questions answered), and I will not be pushed around with appointments. If they can't meet with me then I will need to find a new doctor (of course I won't tell THEM that - who knows if they'd even care).

I was so worked up just now that I had to walk into the kitchen and try a new recipe. It's was forwarded to me from a friend, and although I've tweaked it, it still has the same bones.


Turmeric Tea
1/2 Teaspoon ground turmeric (curcumin)
1/2 Lime (squeezed)
*Add agave, or stevia if you'd like
*Add milk if you'd like

If you don't appreciate Indian food, you may not enjoy this tea, but man, I swear it is scrumptious. I'm a tea fanatic, I actually have a whole drawer full of various teas, and I'm always excited to try new stuff. This drink is special since turmeric is known to kill cancer cells. It's pretty hard to ingest enough to actually kill cancer, but if you start sticking the root or the powder in everything, it sure makes it more likely! I also took two BioPerine pills (black pepper extract). Black pepper aids in the absorption of turmeric. Some people add milk to the tea, but I don't think it needs it. Another note, you'll want to continuously stir it, as the powder settles.

Sorry, for complaining throughout this entire post. I'm frustrated that I get so worked up about this stuff. I wish I didn't care, that I wouldn't have so many questions, that I didn't need to be integrally involved in my care. I wish I could just do whatever the doctors say, and be satisfied. It certainly would be much easier. The thing is, I just absolutely can not do it. I always need it to add up, I need reasons, and I need individualized care. Each cancer fighter is dealing with a unique situation. Patients react differently to mirrored treatments. Each tumor even in the same category is different. They grow differently, the characteristics may be similar, but they manifest in their own way. It is ingrained into my being that I will not survive if I am pooped through the medical system on a one-size-fits-all conveyor belt.

I believe that someday I won't need to take these MRIs so seriously. Someday my MRIs will be an afterthought, or non-existent. Unfortunately, in the meantime, I'm probably going to continue to be the friendly, yet annoying, cancer patient.

4.05.2012

More Micronutrients

Thank you so much for the beet advice! I just made a new juice, a different recipe, and peeling the beet fixed the problem! No grit. So far I'm on my second glass and I don't have any of the dirt. What a relief! Woo hoo!! I'm totally getting nuts with the juicing. Yesterday I made three different batches each as a new recipe. Since I was on the high doses of artemisinin three days out of every week and I wasn't supposed to eat antioxidants, these juices and my blended drinks are H.E.A.V.E.N. to my body.


This recipe is amazing. I'm being good and following recipes since I have such a horrible track record. I figure I'll play around and learn all of the suggested pairings, then when I really get the hang of this I will be able to figure out fun variations of my own. Below is the recipe from today.

Beet Detoxifier
1 Peeled Beet (Include greens & stalks)
4 Stalks Celery
4 Carrots
1 Inch Ginger
1 Lime
1 Green Apple

For breakfast I created a new smoothie, and it was delicious!

Breakfast Smoothie
1 Small Head of Napa Cabbage
1 Large Banana
1 Tablespoon of Orange Flavored Fish Oil

Don't confuse the smoothies with juices. The smoothies you end up eating the entire piece of produce, unlike the juice where the pulp and fiber are removed. I like to vary between the two options. It's important for me to get a lot of the cabbage, kale, watercress, etc. But, at the same time, it's really hard to ingest a whole blender of liquid. That's why it's nice to have a micronutrient dense juice too. I've read that the juicing allows your body to absorb all of the enzymes quickly since the fiber is hard for the body to digest. Removing the fiber speeds up the absorption.

This juicing kick is such a great distraction. It's perfect timing in fact. I have less than two weeks before my MRI and I'm nervous as hell. We stopped the growth of Hermie from October to January, but now I've been on a whole new protocol. Instead of doing the trio of sweet wormwood compounds, I've mainly been taking the artemether which is the fella that crosses the blood brain barrier. We have a friend who used this protocol and cleared up her brain tumor (same type as mine), but it's still scary when you try new things. I'm mostly scared because I didn't eat as strictly as I did for the previous MRI period. It's hard not to overanalyze, and that's why I need distractions.

This morning, I woke and met up with my friend Jessaca and her baby girl. We walked over to Green Lake, and wandered to the playground. It was wonderful to see them! I miss my Wenatchee girls. After that I took a nap until 2:30 pm. I sleep a lot, but while I'm up, I need things to do to keep my mind sane. My life consists of sleeping, juicing, blending, laundry, running, showering, etc. Just the basics - but I like it that way. If I do too much I get run down, and then I get sick. I've come to the point where I'm pretty clear where my energy boundaries are, even though sometimes I still push it and wear my body out. It's always worth it though :)


Last night Meghan and I ran Green Lake, then swung into my house so that I could make her my favorite green apple, carrot, and ginger juice. She was pretty impressed, and laughed hysterically, when she saw our fridge. To be honest, it's been a long time since I've seen anyone else's fridge, so I didn't really know what the big deal was. She grabbed my phone though, to take a picture. I wish I could see what other people's fridges look like. There must be some delicious looking food or something? I still like whole real food, like normal meals, but I really enjoy cleansing my body with veggies and fruit. My body feels so much better. Especially the green drinks. Tonight, Danny has class so I'm on my own for dinner. I think I'll tackle a new green juice. I'm excited about it! In the meantime, I still haven't ran the lake yet today so I'd better get to it. I'm not going to lie, it's beautiful out and I wish I was sitting at Duke's on the patio with a large Hefeweizen and a side of their delicious cabbage salad, but oh well. Maybe later in the week.....who knows.

4.02.2012

Turtles Are Back!

As you can see in the photo attached, my favorite neighbors, the Green Lake turtles, are back. There's a specific log where they love to sunbathe. Each time I run the lake, I always look for signs of my green buddies. It's been months and months since they've shown their adorable faces. What a great omen! I've heard before that turtles symbolize longevity.

As Dan and I jogged the lake in the beautiful sunshine, we laughed and watched everyone stop, and pull out their phones to take photos of the turtles. We hugged and reminded ourselves how lucky we are. Life is truly good! Even though we can't help but be nervous about the MRI, we still recognize how healthy I am and what a wonderful life we live.

I remind myself, often, that this stage in my life is definitely going to be the easiest. My only problem in life is brain cancer. Someday I'll have the stress of working, parenting, and everything that comes with adulthood. For now, I just need to be healthy, find happiness in things around me, enjoy laughter with loved ones, and breathe deeply, inhaling the beauty of life. It's all so simple. Someday, soon hopefully, life won't be all about me and my needs and my survival. I can't wait to worry about the pitter-patter of little feet, or a career. That will be fun!

3.28.2012

Just Doin' His Job

I'm on day two of sprout growing. I drained the seeds and tomorrow, I expect to see just a few sprout faces poking out.


I can't believe I only have three weeks before the MRI. This is such a huge time that happens just four times a year. I've been much more lax on the diet, soon we'll find out if my wayward ways have fed little Hermie. I keep reminding myself, each time I get tense, that it has been important for me to be able to have pizza, ice cream, red wine, sourdough bread, and other fun treats in order to test the limits. I need to see whether it's important to be perfect with my diet, or if just maybe, it's okay to eat some fun non-nutritious foods. It's scary, of course, but man has it been fun :) and delicious.

Tonight is supposed to be my final high dose artemisinin night until after the MRI, but I've decided to extend one more day and up the dosage to counteract the decrease of absorption that goes with the high doses. I'm doing a final kick in the pants to poor little Hermie. He's just been dancing around in there, gobbling up whatever I've been giving him, and I don't think he's going to see it coming. Poor guy...I almost feel bad for him. He's just trying to survive in a tumor eating human world. Just doing his job in life, which of course, is death. Can't really blame him for trying. Adios little Hermie! I wish I could say that it isn't personal, but I'd by lying.
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