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January 2013

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Cleaning Up The System

After the MRI Dan and I splurged with pizza and wine with family, it was delicious! The next morning I recognized the difference in how my body felt. So, to clean up my system, I’ve been eating a vegetable, and fruit diet. Lots of green drinks 🙂 and lots of supplements 🙂 and lots of water. My system gets pretty upset when I eat bad food or drink alcohol. It’s weird. My body used to love wine and bread and cheese, but now it’s giving me attitude. I keep trying from time to time, but the verdict is pretty clear. Good thing I never give up! 🙂 As for the comments on the blog, unless you include your email address, I can not respond privately. At least, I don’t know how to…sorry about that! I still haven’t heard back from Dr Liau about the MRI results. I’m not sure if she will email me or if it will come via hard mail from UCLA. Either way I feel pretty content with how life is going. I’d be lying if I didn’t say I wasn’t freaking out about $$$ for treatments (I’m not sure if I’m saying that correctly – I’m no good with double negatives anymore), but since you have all helped so much with the various fundraisers, we should be able to get through April or May, and soon after that we should have the various fruit seasons…hopefully Dan and I can do the fruit sales in West Seattle and Friday Harbor, perhaps even Green Lake. I’m really excited at the prospect. It will be fun to have a weekend job for a bit 🙂 busy hands are definitely happy hands.

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MRI Pics

Here’s a few pictures from Saturday’s scan. You can see the tumor resection area in photos 2 & 3, the other two are just really cool, yet creepy images. Hope you find them as interesting as we do! There’s a lot of inflammation from the surgery, that’s clear, but there doesn’t seem to be any obvious tumor tissue. From here I’m guessing the doctors use this as a baseline to compare each concurrent scan, watching for changes – nothing scary. Dan are pretty happy with the images. It’s amazing how inflamed my brain is, but it’s only been three months, and after last surgery there was massive inflammation for almost a year. I’m taking a lot of anti-inflammatory supplements (for example boswellia), and focusing on eating lots of anti-inflammatory foods (veggies, fruits, omegas, lean protein, etc.). I’m very excited to read the report from Dr Liau, I hope I’m not jumping the gun and that my confidence isn’t in vain. There’s no harm in being happy and positive. If I end up being wrong, oh well, there’s always time for disappointment later 🙂

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Finished

I’m done with the MRI, and it wasn’t bad. They scheduled me for a 30 minute scan. A baby by all standards. I still had to do the contrast dye (no biggie), but the sweet girl hit my vein on the first try. Yessss!! I had already fallen in love with her when she said, immediately upon meeting, “You look so young for your age!” As she glanced upon my chart and looked at my 32 years. Anyway, Dan said I’ve been smiling non-stop (even though the official results won’t be in our hands for a week or two) and I should take a picture. So here it is 🙂 I haven’t been in many pictures lately. I like to avoid or if I do, I’m never pleased. I need to get over myself. Here goes nothing…

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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 1Arrived Frankfurt and took the train to Gottingen (2 hour ride on the high speed)Spent the night in Gottingen Day 2Taxi to Duderstadt (30 min ride)Checked in at clinic for blood work and met with Dr Germany Day 3Leukephresis (2.5 hour allotted appointment)Met with Dr Germany Day 4HyperthermiaIV of immunotherapy (each IV included 1 billion) Day 5recover Day 6recover Day 7Hyperthermia (cancelled due to reaction)IV of immunotherapy Day 8Hyperthermia (cancelled due to reaction) IV of immunotherapy (cancelled due to reaction)Met with Dr Germany Day 9Hyperthermia (cancelled due to reaction) IV of immunotherapy Day 10Shot of my dendritic cells (13 million) primed my immunotherapyMet with Dr GermanyTook taxi to Gottingen and spent the night in hotel Day 11Took high speed train to  Frankfurt and spent the night in hotel in airport Day 12Flew 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) 2013February 13…

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Home

I’m back home, and have been recovering since Saturday afternoon. I’m still pooped, trying to get back to a normal schedule. Mostly, I sleep during the afternoon, wake up and wander around the house in the late evening, then sleep in the late morning. I’ve slept one amazing seven hour spurt, but the average has been five hour increments. It’s not great. I’m incredibly grateful that I’m able to sleep as much as I can, whenever I can. I was able to make the trip without any seizures, and I’m resting as much as humanly possible right now so that I won’t have any problems in the near future. When I came back from Poland a year and a half ago, I didn’t rest, pushed myself too hard, drank too much coffee, and endured my grand mal seizure. I will never be that frivolous again. Although I never want to miss out, I know my limitations 🙂 I hate the reality of my condition, but I know that my body will win if I put up a fight. It’s better to just relax, and roll with the punches. Speaking of punches, this Saturday is my first MRI since being released from the hospital from surgery. Since my MRI scan and report are sent directly to Dr Liau, I’m able to have the appointment on a Saturday. How fun is that! Now Dan doesn’t need to take time off of work. I’m excited to not have to meet with any UW doctors. I won’t have to fight to avoid radiation. I won’t be manhandled. It’s such a relief! I’m still nervous for the results, but the tumor is something we have to monitor, so of all the scenarios, this one is the best. Lets hope that the MRI shows a vacancy…

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6th Germany Update

Well, I just woke up from over 15 hours of sleep. Yesterday was my first immunotherapy shot primed with my dendritic cells. At one point, I woke from my nap while Green was getting ready to head down for dinner and she pointed out the beads of sweat all over my back and chest. Apparently the fever kicked in. Yes! Exactly what we wanted. I used the bathroom, and fell back into bed. I’ve been exhausted. You want to have a fever because it means that the virus is infecting the tumor cells that my body can now recognize as virus and my body creates a fever while cleaning up the bad cells. The tumor cells are considered an infection that must be attacked (by my dendritic cells) and removed. That’s the thing about tumor cells, the are usually cleaned up by a healthy body before they turn into cancer. My body, for some reason, has not been recognizing Hermie as a freeloader. The shots are very easy to endure just deep exhaustion, slight fever, and ache throughout the body. Easy stuff. (Easy now that I’m rested anyway.) Before the shot, Green and I asked Dr Germany all of our questions. He is fantastic, always wanting to make sure that we understand everything. He’s usually late, but it’s because he’s so thorough. We never minded. Our whole point for this trip was the treatments. I would have sat there all day, happily, if that’s what it took. After the shot yesterday, Green and I took a Dramamine (taxi rides are rough), and headed to Gottingen, where I cozily lay in bed. It’s only 5:00 am, but that’s about my wake up each morning. I’ve always been a morning person, but this is crazy! It has been nice, though, that every…

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5th Germany Update

Just woke from a bad nightmare. I have such vivid dreams. Yesterday, when I arrived at my appointment, the nurse took one look at me and called Dr Germany. I tried to explain that I looked awful because I was reading a sad book (true story) and it made me cry (also true), but she wasn’t having it and postponed my immunotherapy for later this morning. I’m feeling much better after having a break. Now I just have the immunotherapy this morning at 9:30 am, then tomorrow I have the immunotherapy primed with my dendritic cells. Then I’m done. Until my reoccurring New York appointments, that is. I had more hyperthermia appointments scheduled, but I’m canceling them, obviously that treatment does not work well with my body. I had been so excited, but oh well. Here’s a photo of green and I last night when we wondered off for her birthday dinner. We were literally laughed at in our bright coral and yellow coats (by our bell boy) because 99.9% of Duderstadters wear black, brown, or gray coats – either puffy or real fur trench coats. Apparently we did not get the memo.

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Fourth Germany Update

So ever since my first hyperthermia on Friday, I’ve been experiencing an ongoing headache. I thought that maybe it was an effect of the immunotherapy shot. When we checked into the appointment yesterday for my next hyperthermia, I mentioned the headaches. The nurse gave a concerned look and called Dr Germany. One of the side effects of hyperthermia can be edema (swelling) and it looks like that’s what I’m dealing with. They canceled my hyperthermia, but still gave me my immunotherapy shot. I’ve been feeling pretty off so Green walked me back to the hotel and we put me back to bed. My body is exceedingly exhausted from all the travel, and all of the procedures. My sleep patterns are all messed up – in fact it’s three in the morning. When I finish this post I will take two Advil PMs and see if I can knock myself out. The headaches have been very bad, but I didn’t really want to write about them and complain. I should be honest though so that people who may want to try these treatments can have my account and have all the information. I have also been taking high doses of boswellic acid that Dr Germany prescribed. It’s an anti-inflammatory. It’s much more concentrated than I can get in the states. I stopped taking those pills yesterday afternoon as well. I’m trying to pinpoint exactly what’s making me feel so sick. I keep having to remind myself that it hasn’t even been three months since my brain surgery. I need to be careful and listen to my body. My body feels dangerously close to having a seizure, a feeling that has hovered lately in my cells. I feel bad for Green because I spend most of the days in bed. I’ve missed…

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3rd German Update

Below is a photo of the view off our room. After the first night in Duderstadt, we woke to a tile saw directly below us. When we stopped by the front desk on our way to the clinic for leukepheresis, we asked how long the construction would last and the sweet woman surprised us when we got back from the appointment with an upgraded room – a suite. Green and I have been treated so well, upgrades at every turn. We’ve decided it’s because we’re really giggly, and smiley, grateful and happy 🙂 I have another hyperthermia and oxygen treatment at 1:00 pm today, directly followed by another Newcastle disease virus shot. There will three of those all together, then a shot with the Newcastle disease virus primed with my dendritic cells. The Newcastle disease virus only attaches to neoplastic (tumor) cells. Your body recognizes the NDV on the coating (and sometimes inside the tumor cells) and your body cleans them up. The whole process is very interesting. Most people get flu like symptoms from the shots, but so far I haven’t had a fever – which would be ideal. That would mean that the tumor cells were becoming infected. I think that because my brain surgery was so recent, and my tumor burden is so low, the quantity of tumor cells in my body is very small so although they could still be getting infected they might not effect me very dramatically. That’s my take on it anyway 🙂 those poor little stragglers from the surgery are scrambling to live in my brain and they’re running out of places to hide 🙂 I should be asleep right now, Green’s sleeping as it’s only 6 am. I’ve been up for an hour. I’ve been sleeping in the afternoons, waking and…

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2nd Germany Update

I forgot my converter for the computer, and it died. I’ve been limiting cell use because, without my computer I can’t charge my phone. Oops! I will do updates when I get back. So far I’ve completed the leukepheresis, a hyperthermia with oxygen and a shot of the immunotherapy. I can’t wait to explain everything! It’s all so hopeful!! I keep thinking while they heat my head, or endure needles, that I’m one lucky girl to be able be here at Dr Germany’s clinic. I read about it a couple of years ago and it seemed unattainable, but here I am. Once again I’m in the hands of a cutting edge doctor. A specialist in his field, one of the top experts in the world. Wow. And he giggles. A genius that smiles and loves what he does. I’m having so much fun!! It’s a fabulous place to be 🙂

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