I love you guys!
12.31.2012
Cheers to Another Fabulous Year
Hello my friends! I hope you all have a safe and wonderful New Year's Eve. I am so filled with gratitude for the past year and can barely contain my excitement for the future! We have so much to look forward to, a life full of surprises, time to build on our momentum and I love it :) I think to myself all the time how lucky I am. My resolution is to think about others more often than I think about myself. I had gotten in a bad way about my journey, always focusing on me and I hate it. That's the beauty of life, though. You can always change what you don't like about yourself. You can be anyone you want, you can shift priorities, and decide how you want to live your life. It's beautiful. You're never stuck in a box, unless you want to be :)
I love you guys!
I love you guys!
12.26.2012
Training
Danny and I arrived home yesterday, and it feels so good! The time we spent back at home in Friday Harbor was AMAZING, but I've been increasingly nervous about the Germany trip. There are all kinds of details to take care of, and of course I'm trying to remain rested for the long trip but that's hard to do during the holiday season. A year and a half ago, my first seizure occurred a week after an international trip. I believe that the traveling was much harder on my body than I realized, then to mask my exhaustion I chugged espresso day after day. I now know that I need to be very diligent about how I treat my body. I just don't have the ability to push things like most people.
I figure that since I can't push my body like most others, instead, I will train for the trials that I can prepare for. While Dan and I were in Friday Harbor for Christmas, I ran my furthest distance since the surgery. It was 6 miles. Somewhere around mile four Dan and I started high fiving, realizing that only two months and a week ago, I was on an operating table while Dr Liau gently removed my brain tumor. I have recovered so well! This has been such a change since my first brain surgery. I feel incredibly encouraged by Dr Liau, and her fine skills. I have been lifting weights, running - even challenging myself with sprints. I want my body to be in tip top shape to combat the exhaustion of the trip. I don't want to be a burden on my travel buddy. And, I want to have a canvas that will excitedly accept the treatments like vitamins. I want a body that is prepared to use the immunotherapy to heal itself. I'm having so much fun with the physical training, and still taking time off with friends - the best of both worlds. But, as time nears the trip I will probably be hidden at home. Even if I'm just in bed, not sleeping, I'll need to keep my body rested. I'll be yo-yoing between exercise and downtime. It's weird, but I cherish my body's ability to move, to sweat, to rip my muscles then heal. I love the fact that I'm alive, and I'm excited for this new adventure!
I figure that since I can't push my body like most others, instead, I will train for the trials that I can prepare for. While Dan and I were in Friday Harbor for Christmas, I ran my furthest distance since the surgery. It was 6 miles. Somewhere around mile four Dan and I started high fiving, realizing that only two months and a week ago, I was on an operating table while Dr Liau gently removed my brain tumor. I have recovered so well! This has been such a change since my first brain surgery. I feel incredibly encouraged by Dr Liau, and her fine skills. I have been lifting weights, running - even challenging myself with sprints. I want my body to be in tip top shape to combat the exhaustion of the trip. I don't want to be a burden on my travel buddy. And, I want to have a canvas that will excitedly accept the treatments like vitamins. I want a body that is prepared to use the immunotherapy to heal itself. I'm having so much fun with the physical training, and still taking time off with friends - the best of both worlds. But, as time nears the trip I will probably be hidden at home. Even if I'm just in bed, not sleeping, I'll need to keep my body rested. I'll be yo-yoing between exercise and downtime. It's weird, but I cherish my body's ability to move, to sweat, to rip my muscles then heal. I love the fact that I'm alive, and I'm excited for this new adventure!
12.25.2012
Merry Christmas!
I hope all of you are engulfed with laughter this morning, get your fill of hugs, and feel completely loved. Danny and I are so grateful for our amazing family and wonderful friends! Thank you for making our lives constantly so perfect. We love you all!
12.17.2012
On To Immunotherapy
Good morning friends! Here's a rundown of things....
1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.
2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.
2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV..
As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally, NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).
In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).
3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!
When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.
Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)
1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.
2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.
2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV..
As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally, NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).
In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).
3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!
When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.
Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)
12.14.2012
Love to Connecticut
I have been a zombie since I saw the news of the elementary school shooting in Connecticut. This story is literally heart breaking. So, so, so sad, and I hurt for the families, and the community. I think our whole country is in complete shock. It's just too horrific for us to digest. Such an evil act against sweet, innocent, beautiful little children and their protectors. I can't write anything else, I'm going to use the rest of my day to send my love, and energy, and prayers toward Connecticut.
12.12.2012
Success!!
I was going crazy, completely restless so I got dressed, grabbed my seizure pills and phone, a house key, and I was off.
I walked/slogged/sprinted around the lake, all by myself. Heeeey-oooooh!!! I'm back! Look out, Green Lake Gump is back with a vengeance.
I walked/slogged/sprinted around the lake, all by myself. Heeeey-oooooh!!! I'm back! Look out, Green Lake Gump is back with a vengeance.
12.11.2012
Tumor Hunting
Ok. The enema happened. Some of my cancer friends swear by them, others hate them, though most haven't tried one. That's the great thing about options, you can make your own decisions in life. For the record, for the first several hours I felt great, that is until I ate something. For about 24 hours after the enema, each time I ate something I could hear and feel my unhappy intestines and organs trying to digest. I just don't know if the coffee enema is for me. Healthy things shouldn't physically hurt you. It just doesn't make sense. Unless I did something incorrectly in the procedure, or maybe I ate the wrong foods afterward? I might try again in the future, but for now the coffee enema will not be a regular occurrence.
For the past several days I've been trying to track down my tumor, figure out what it's preserved in, the volume of the tissue, how to get it shipped to me, etc. I've been writing back and fourth with three different doctors - the whole thing is crazy. It's a lot of work being general manager of your health. I imagined, when I was first diagnosed, that one oncologist would help use his/her connections with treatments, clinical trials, recommendations with cutting edge information, in the case that he/she were limited with personal treatments. I had no real knowledge about hospitals, I had never even broken a bone. I now know that hospitals are just big businesses (where some amazing things happen). Also, there's really either not a great database within doctors for accessing treatments, clinical trials (there is one, but it's not great - not updated often enough), or adjunct therapies - or the doctors of my past (except UCLA) have just been too busy to help me out. Maybe it's a combo. What am I saying, of course it's a combo.Ok, I'm ranting. Sorry about that. I think I'm just cranky about having to research everything, contact everyone, and figure it all out. It's exhausting. It's impossible. I wake up in the middle of the night wondering if I'm making the best decisions. It's enough to want to give up at times.
Here's a photo taken along HWY 99...it's a Christmas peace heart...I LOVE IT :) Maybe it's telling me I shouldn't be such a cranky buffalo face.
For the past several days I've been trying to track down my tumor, figure out what it's preserved in, the volume of the tissue, how to get it shipped to me, etc. I've been writing back and fourth with three different doctors - the whole thing is crazy. It's a lot of work being general manager of your health. I imagined, when I was first diagnosed, that one oncologist would help use his/her connections with treatments, clinical trials, recommendations with cutting edge information, in the case that he/she were limited with personal treatments. I had no real knowledge about hospitals, I had never even broken a bone. I now know that hospitals are just big businesses (where some amazing things happen). Also, there's really either not a great database within doctors for accessing treatments, clinical trials (there is one, but it's not great - not updated often enough), or adjunct therapies - or the doctors of my past (except UCLA) have just been too busy to help me out. Maybe it's a combo. What am I saying, of course it's a combo.Ok, I'm ranting. Sorry about that. I think I'm just cranky about having to research everything, contact everyone, and figure it all out. It's exhausting. It's impossible. I wake up in the middle of the night wondering if I'm making the best decisions. It's enough to want to give up at times.
Here's a photo taken along HWY 99...it's a Christmas peace heart...I LOVE IT :) Maybe it's telling me I shouldn't be such a cranky buffalo face.
12.07.2012
Coffee Enema
Three guesses about what I'm about to do when I finish this post.....
Really quick, thank you for all of the amazing comments, and support for my treatment!! I appreciate you guys so much!
I have a funny, gross post today...I have been meaning to do a coffee enema for about, well, a couple of years - ever since I started researching important things to do for cancer patients. I really do want to do this enema, for the results, but I'm TERRIFIED of the process. Coffee enemas are very effective at stimulating the immune system. (Check out The Gerson Therapy.) Therefore, I figured it is now seriously time for me to buck up. I've made it this far, taken all kinds of supplements, conquered a few brain surgeries, and now I'm embarking on an immune system boosting treatment with the vaccine....I should be woman enough for a coffee enema. Right? GROSS!!! I can not believe I have to do this. I'm supposed to do it once a week. I hope this doesn't turn into a complete disaster. Wish me luck. Sorry, is that too much to ask? Sorry if you're totally offended.
EEEEEEEEEEEEEEEEEEEEEEEEEEK!!!!!!!!!!!!!!!!!!!!!!!!!
Here goes nothing. Or, more accurately, here goes my innocence and dignity...
Really quick, thank you for all of the amazing comments, and support for my treatment!! I appreciate you guys so much!
I have a funny, gross post today...I have been meaning to do a coffee enema for about, well, a couple of years - ever since I started researching important things to do for cancer patients. I really do want to do this enema, for the results, but I'm TERRIFIED of the process. Coffee enemas are very effective at stimulating the immune system. (Check out The Gerson Therapy.) Therefore, I figured it is now seriously time for me to buck up. I've made it this far, taken all kinds of supplements, conquered a few brain surgeries, and now I'm embarking on an immune system boosting treatment with the vaccine....I should be woman enough for a coffee enema. Right? GROSS!!! I can not believe I have to do this. I'm supposed to do it once a week. I hope this doesn't turn into a complete disaster. Wish me luck. Sorry, is that too much to ask? Sorry if you're totally offended.
EEEEEEEEEEEEEEEEEEEEEEEEEEK!!!!!!!!!!!!!!!!!!!!!!!!!
Here goes nothing. Or, more accurately, here goes my innocence and dignity...
12.05.2012
The $100,000 Shots
Oh guys, Dan's at the gym, and I'm panicking. Seriously panicking. A hundred thousand dollars for the shots?!? What am I doing? That's the shots alone. We've seen the monster of Hermie fighting against my best efforts to stop him. This is so much money, and it's not for a child or a college fund or even a house. This is to hopefully save my life. You get to the point where you would do anything to save your life, but it's still terrifying. I still can't believe I'm in this position - probably because I never look in the mirror (total denial), and because I'm home 95% of the time.
I have to do this though. I can't just sit here and wait for brain tumor growth.
This whole thing makes me nauseous. I don't even want to pay to fix my hair with extensions or some sort of hair thing to make me look pretty because I don't want to waste the money, or feel vain when I'm dealing with so much big stuff. Yet I want it. I want to feel gorgeous with a full head of hair, to feel sexy, and young, and invincible. To be able to blend, and laugh, and not have to wear a hat or worry about my scar showing through. I'm going on a tangent...sorry about that. Just ignore me. I'm going to find Bingie and cuddle for a bit. Good night.
I have to do this though. I can't just sit here and wait for brain tumor growth.
This whole thing makes me nauseous. I don't even want to pay to fix my hair with extensions or some sort of hair thing to make me look pretty because I don't want to waste the money, or feel vain when I'm dealing with so much big stuff. Yet I want it. I want to feel gorgeous with a full head of hair, to feel sexy, and young, and invincible. To be able to blend, and laugh, and not have to wear a hat or worry about my scar showing through. I'm going on a tangent...sorry about that. Just ignore me. I'm going to find Bingie and cuddle for a bit. Good night.
Overview of My DCT
My hair is growing pretty quickly. I'm so grateful that I do not work so that I don't have to deal with the image issue! I can do a pretty sweet comb over - I need to take a picture of that (maybe later today). On to bigger news though.....I'm headed to GERMANY!
I don't even know where to begin....
Hope I can make sense of all this with my keys. My white blood cells are well above normal meaning that I am the perfect candidate to undergo dendritic cell therapy in Germany. I am waiting for an email from my NYC doctor with a few dates in January for me to pick from.
1. Two weeks before I leave for Germany I need to get my blood work done again to check for my white blood cell count, my kidney function, liver enzymes and electrolytes - stuff like that. I need to have that go well or I can not do the dendritic cell therapy. In which case I will still go, and take the opportunity to get some other alternative treatments like hypertherpia and such.
2. If I pass the blood work, I will head to Germany sometime in mid January.
3. Day 1 in Duderstadt I will have another blood test.
4. Day 2 I do a procedure called leukapheresis. It's a two hour procedure where they continuously draw my blood, removing the white blood cells and re-inject the blood back into my body.
5. From Day 3-6 I will get as may hyperthermia treatments as possible, as well as a treatment called newcastle virus shots.
6. Day 8 I will get my first dendtritic cell shot vaccine, then I can go home.
The trip will take a minimum of 8 days, but that's just the time in Germany. It, of course, will take some travel time to and from.
7. Four to six weeks after Germany I will fly to NYC to get my next shot. Over the next year I will fly to NYC five times to get more shots.
8. In 2014 I will fly to NYC for vaccines four times.
9. In 2015 I will fly to NYC for vaccines three times.
10. In 2016 I will fly to NYC for vaccines three times.
11. In 2017 I will fly to NYC for vaccines three times. At the end of that year, if there is still no tumor growth they will consider me "cancer free" and I will no longer need to do more shots!
In shots alone it will be around $100,000. You pay as you go, and the price is based on the Euro. I have no idea how much this is going to ultimately cost. I tried doing supplements, diet, and exercise alone and the tumor still grew (albiet not very fast). I am planning on remaining on program, but adding the treatments in Germany and the five year dendritic cell therapy treatment.
I am very excited about this new chapter of my life. It is going to have a huge price tag, but I can not tip toe around my health, I need to exhaust the most cutting edge treatments no matter the cost. This is a five year commitment, which sounds crazy when I've heard and read that my average life span is equivalent. I have a nasty type of astrocytoma, and it is something to be respected. I need to fight smart, not just hard. At this point, Dr Liau told me that there is no measurable tumor, that she was able to perform a gross total resection. I feel this is the exact time to start this treatment to jump start my immune system, teaching it to clean up my tumor. I know what it feels like to chase the cells, trying in vain to clean them up, to shrink the tumor. It's too stressful! I want to try and keep this clean slate, and I will do it at any cost.
It's exciting, thrilling, nerve wracking, and a little stressful. After happily discussing everything with Dan, his smile faded, he looked at me soberly and said, "Huh...I guess there goes kids." We both sat there for a few minutes and then started laughing, realizing that we were jumping waaaaay ahead of ourselves :) Women have babies at 37 sometimes....right? :) Least of our worries, but things like that do pop into our minds from time to time.
Another note about Germany, my travel partner will be my buddy Michelle Green! I'm so excited to take this goofy, laugh filled trip - which always happens with her :) She's taking off time from work, and has already started researching flights, trains, cars, and our sweet little German town in the middle of nowhere. I will be in great hands! Even though this a medical trip, it feels like it's going to be a girls trip, a vacation. I CAN'T WAIT!! :)
12.04.2012
12.03.2012
Slogged The Whole Lake!!
Dan and I just slogged the lake!!! We went through the blustery rain, a total of three miles in 45 minutes. A pace of just under 13 min mile. No stops.
I'm enjoying focusing on getting better. I have completely revamped my diet, back to its' normal state, along with restricting my calories by 30-40%. It is widely proven that a carbohydrate and calorically restricted diet helps starve tumors and cancer in general. If you calculate the proportions correctly with enough healthy fats and delicious protein, you have enough energy and tend to be satiated. Inevitably, there will be times when you're hungry, but hunger is not that big of a deal, just put water on to boil. Decaf teas of various flavors become your proverbial box of chocolates. And, they heat you up instantly, unlike the type warmth you get from candies (if you know what I mean).
Tomorrow I find out if I'm able to head to Germany for dendritic cell therapy....I'm so nervous!!
To distract, Dan and I decorated our Charlie Brown tree (that's Dan calls it anyway).
By the way, I still haven't gotten back into email or Facebook. It might be a bit. I'm starting with blogging and I'll continue to integrate slowly. I'm happy though, and very excited about how well things are progressing. I'm sleeping a lot, but that makes sense since I'm pushing myself quite a bit. YAY! I love pushing myself!!
I'm enjoying focusing on getting better. I have completely revamped my diet, back to its' normal state, along with restricting my calories by 30-40%. It is widely proven that a carbohydrate and calorically restricted diet helps starve tumors and cancer in general. If you calculate the proportions correctly with enough healthy fats and delicious protein, you have enough energy and tend to be satiated. Inevitably, there will be times when you're hungry, but hunger is not that big of a deal, just put water on to boil. Decaf teas of various flavors become your proverbial box of chocolates. And, they heat you up instantly, unlike the type warmth you get from candies (if you know what I mean).
Tomorrow I find out if I'm able to head to Germany for dendritic cell therapy....I'm so nervous!!
To distract, Dan and I decorated our Charlie Brown tree (that's Dan calls it anyway).
By the way, I still haven't gotten back into email or Facebook. It might be a bit. I'm starting with blogging and I'll continue to integrate slowly. I'm happy though, and very excited about how well things are progressing. I'm sleeping a lot, but that makes sense since I'm pushing myself quite a bit. YAY! I love pushing myself!!
12.02.2012
Partially Back
Hi Friends! I'm on limited technology. And I have to say that Dan is truly amazing. He can read me so well. In my downtime I've been able to focus on resting. I started a new routine in the mornings, I wake up and pick up the house, make the bed, do any random dishes from Dan's breakfast and I've even been doing small loads of laundry. I do chores for one hour, then put the kettle on and I start stretching. I make a tea, as it cools I continue to stretch and do floor exercises.
I've been able to paint two large canvases for my niece and nephew, which is VERY exciting! I lay in bed every day from 1-3, sometimes napping, other times just laying with my eyes closed (usually pinned by my cat). Dan has been joining me on evening walks. For the first time in weeks Danny had Saturday off, so yesterday morning Dan and I walked, and jogged from our house down and around the lake, then home. The entire trip was about 4 miles. I slogged a total of 1 mile (not consistently).
This morning Dan took me to the gym for the first time since the surgery. We spent a little under an hour, which is fantastic! Heading to the gym is a very big deal because the noise of the loud music, voices, weights clanging - the smells of cleaners, the bleach and vibrations of the cardio machines can be overwhelming at times, triggering auras. I have always been able to get out of the gym before it has turned into a seizure but it's still very scary. Today though, it was a complete success! We worked out on the cardio machine, we did weights and I even went into the woman's locker room to weigh myself without Dan's supervision (I can be overwhelmed at times doing things alone without Dan or someone in case of a seizure).
I feel like I'm focusing on resting, and utilizing my energy for physical activity which is integral for my improvement. I appreciate your patience with emails, texts, phone calls and Facebook stuff. I'm still not back, and at this point in emails alone I have over 75+ legitimate emails that I have yet to respond to. I love all of my friends and family so much, and I'm sorry I'm not a good friend these days. I don't know how long it's going to take me to get caught up, and I'm sorry for that! It's probably going to take a very long time. I probably also won't be up for social stuff, even walks or runs for a bit. It's amazing how tired I am after a normal day, for now I just need to remember that I'm healing and I need to get into a normal routine, take it easy, and as soon as I'm able to get my life semi-back to the way it was, I can start getting social :) I think, initially, I jumped out of the gate running and it was a mistake. I'm fixing it though :)
I love you all, so much. I'm sorry to those of you who I have yet email back, etc. I appreciate the patience.
Tuesday afternoon I have a phone call with my NYC doctor. He will review my surgery notes, my blood work, and my overall health to see if I'm a viable candidate for dendritic cell therapy in Germany. I'm excited, and nervous. My stomach is full of butterflies. Not much rest for the weary :)
This therapy could help clean up residual tumor (the invisible cells) and teach my body to recognize tumor cells as the enemy for the future. To train my body to seek out and rid my body of cancer cells would be AWESOME!! Fingers crossed that the appointment goes well. I'm also grateful that I'm able to discuss my situation over the phone with my doctor, that I don't have to travel. Lots to be thankful about.
11.27.2012
1st Solo Trip
Okay, so I only made it 1 block, then started to panic. I was slogging, and I couldn't feel my right foot, leg, arm or hand and my heart started racing, and I wondered what would happen if I had a seizure (I've been feeling off), would anyone find me? How long would it take? I would end up in an ambulance all alone, in a hospital all alone, and I thought to myself, "Why am I pushing this?"
Last surgery it took 5 months to be able to slog a 10k. I haven't even walked alone yet and here I was on a journey around the lake which would require 45 minutes of running, door to door, at my pre-surgery pace. Sometimes I jump into things too quickly...
Hey everyone, this is Dan and I have commandeered this blog from Jessica. I came home early today to find Jess in a less then desirable state. She was completely exhausted, stressed to the limit, and still trying to finish her blog. Although the parameters will need to be discussed, I feel it is necessary to institute another technology blackout. Jess feels extremely guilty when she does not respond to texts and emails, or puts off blogging for too long. As with everything in her life she needs to be 100% in (or out in this case). If she is going to answer one email she will answer 100. She loves communicating with friends and family, and appreciates all the support, but sometimes her love for gab gets in the way of her healing. Jessica's recovery is so vastly different from her first surgery that it can trick you into thinking she is farther along then she is. Because she is doing so well physically its hard for me to remember that she is still only roughly five weeks removed from brain surgery.
As with the cancer in general, you do not see the area that is hurting. There are no bandages or limps to identify the problem, just an attempt at understanding the intricacies of her healing brain. Many times I have misjudged Jess's comfort levels and stamina because her physical and communication skills can take her far past the end of her cognitive stamina.. Unfortunately, I usually do not know I have misjudged her comfort level until it is too late and she is burnt out. Jess is still attempting to get back to the routine of her normal life, and sometimes responding to the number of emails and texts she receives can take up a day in itself. She receives more emails and texts in one day, then i do in a week.
I hope that this will give everyone an understanding of why we are restricting Jessica's technological outlets for a bit. It is not just because I am mean, I promise. I am sure that she will be back at it within half the timeline we agree on, but it will give her some time to relax and catch up on much needed rest. She hopes everyone understands her silence, and thanks you all for your support.
'till the next technological intervention, Dan.
P.S. I have been writing this for roughly ten minutes and Jess is already asleep.
Last surgery it took 5 months to be able to slog a 10k. I haven't even walked alone yet and here I was on a journey around the lake which would require 45 minutes of running, door to door, at my pre-surgery pace. Sometimes I jump into things too quickly...
Hey everyone, this is Dan and I have commandeered this blog from Jessica. I came home early today to find Jess in a less then desirable state. She was completely exhausted, stressed to the limit, and still trying to finish her blog. Although the parameters will need to be discussed, I feel it is necessary to institute another technology blackout. Jess feels extremely guilty when she does not respond to texts and emails, or puts off blogging for too long. As with everything in her life she needs to be 100% in (or out in this case). If she is going to answer one email she will answer 100. She loves communicating with friends and family, and appreciates all the support, but sometimes her love for gab gets in the way of her healing. Jessica's recovery is so vastly different from her first surgery that it can trick you into thinking she is farther along then she is. Because she is doing so well physically its hard for me to remember that she is still only roughly five weeks removed from brain surgery.
As with the cancer in general, you do not see the area that is hurting. There are no bandages or limps to identify the problem, just an attempt at understanding the intricacies of her healing brain. Many times I have misjudged Jess's comfort levels and stamina because her physical and communication skills can take her far past the end of her cognitive stamina.. Unfortunately, I usually do not know I have misjudged her comfort level until it is too late and she is burnt out. Jess is still attempting to get back to the routine of her normal life, and sometimes responding to the number of emails and texts she receives can take up a day in itself. She receives more emails and texts in one day, then i do in a week.
I hope that this will give everyone an understanding of why we are restricting Jessica's technological outlets for a bit. It is not just because I am mean, I promise. I am sure that she will be back at it within half the timeline we agree on, but it will give her some time to relax and catch up on much needed rest. She hopes everyone understands her silence, and thanks you all for your support.
'till the next technological intervention, Dan.
P.S. I have been writing this for roughly ten minutes and Jess is already asleep.
11.24.2012
Happy Thanksgiving
I hope everyone had a wonderful holiday! Dan and I hosted our brother and sister-in-law and their son. Christel and I cooked an entire thanksgiving meal (my first). It was hilarious! I never understood the necessity of timing for such a feast. Usually I'm with the boys watching football. I seriously deeply appreciate the women (and few men) who have cooked Holiday meals in the past. It truly is a logistical nightmare! Some things were a little cold, a couple of things were forgotten, and we might have over cooked the turkey, but it was also delicious! Thankfully none of us are picky :)
Now I'm relaxing at my parents house. I think it's been around 6 months or so since I've been here, it tricky when you can't drive and traveling alone isn't an option. I've been excited to get here, but I was also very nervous. The movement and travel are exhausting. It kind of jumbled up my brain. It's frustrating but I try to remember that I'm just over a month past brain surgery.
I'm recovering well, but its also confusing. I look in the mirror and I think I look fine, but I don't always feel fine. I still can't leave the house alone. I can't be in fluorescent lights or shopping centers, or anywhere too loud. My brain gets overwhelmed easily, yet refuses to nap. My right side has not improved, but I'm learning to work around it. It takes 5-10 attempts to put a glove on my right hand. It takes about 10 +/- minutes to put earrings in. I can finally put a bra on by myself (no more sports bras...yes!) - still it takes several attempts. I'm getting better at doing things that make me feel like a normal girl, but the sensation is still horribly lacking. It's creepy, and messes with my confidence. I know it will get better bit it physically feels bad, it almost makes me nauseous and definitely frustrated. I want to run it out or go lift a weights to wake it up, but I can't leave the house alone and I can't workout at the gym because of the stimulation. I've gotten fatter, which I know will get better when I'm able to truly exercise, but it's hard to keep positive when I'm missing my endorphins.
I try and find someone to walk with five days a week, but at heart I'm a runner and I need speed. Hopefully ill be able to start pushing the boundaries so that I can get out alone. I'm scared though. I've been overwhelmed once since the surgery when I thought I might be having an aura. I took a lorazepam and stuck my head into the crisp cool air and I calmed down. I just don't want to have a seizure out around the lake all by myself, worse even would be along the walk to the lake among the neighborhoods. It could be very ugly. I don't want to push things and yet at the same time it's the only thing I DO want to do. It's all a gambling game.
I'm going to try and take a nap. I'm pooped.
Now I'm relaxing at my parents house. I think it's been around 6 months or so since I've been here, it tricky when you can't drive and traveling alone isn't an option. I've been excited to get here, but I was also very nervous. The movement and travel are exhausting. It kind of jumbled up my brain. It's frustrating but I try to remember that I'm just over a month past brain surgery.
I'm recovering well, but its also confusing. I look in the mirror and I think I look fine, but I don't always feel fine. I still can't leave the house alone. I can't be in fluorescent lights or shopping centers, or anywhere too loud. My brain gets overwhelmed easily, yet refuses to nap. My right side has not improved, but I'm learning to work around it. It takes 5-10 attempts to put a glove on my right hand. It takes about 10 +/- minutes to put earrings in. I can finally put a bra on by myself (no more sports bras...yes!) - still it takes several attempts. I'm getting better at doing things that make me feel like a normal girl, but the sensation is still horribly lacking. It's creepy, and messes with my confidence. I know it will get better bit it physically feels bad, it almost makes me nauseous and definitely frustrated. I want to run it out or go lift a weights to wake it up, but I can't leave the house alone and I can't workout at the gym because of the stimulation. I've gotten fatter, which I know will get better when I'm able to truly exercise, but it's hard to keep positive when I'm missing my endorphins.
I try and find someone to walk with five days a week, but at heart I'm a runner and I need speed. Hopefully ill be able to start pushing the boundaries so that I can get out alone. I'm scared though. I've been overwhelmed once since the surgery when I thought I might be having an aura. I took a lorazepam and stuck my head into the crisp cool air and I calmed down. I just don't want to have a seizure out around the lake all by myself, worse even would be along the walk to the lake among the neighborhoods. It could be very ugly. I don't want to push things and yet at the same time it's the only thing I DO want to do. It's all a gambling game.
I'm going to try and take a nap. I'm pooped.
11.19.2012
Morning Laugh
Saw this video this morning and laughed out loud, then knew I had to share. Best morning video ever!! Poor little baby red panda..
11.18.2012
Two Irish Boys
I'm relaxing on the couch under my favorite faux fur throw. I truly do not even feel like I have anything wrong with me! Still got the numbness thing going on, and lack of dexterity in the hand, but shoot that's nothing. I'm thrilled!
I've already gone on several three mile even a couple of four mile walks with friends. In no time I'll be jogging around the lake :) I have to keep pushing the limits because I'm bored. Dan's working 10 hours a day which takes him away from the home on average 13 hours a day, and now he's working spans of 9 days in a row. I'M SO BORED. I am so grateful that Dan has a job, I remember the year and a half when he was out of work (which was perfect for nursing me to health from the first brain surgery). I feel dumb even saying anything. Maybe its because I'm jealous. I wish I could work. I can't wait to wake up in the morning, be all sleepy and groggy and rushed, and get in traffic as I drive or ride the bus to work. I can't wait to have co-workers, and office politics, and new friends, and hear about other people's lives on a daily basis. It's going to be so fun!
So here's the current deal, I am in talks with doctors at the German clinic to do the dendritic cell therapy. I have a phone consultation on Dec 4th. In the meantime, I've been trying to get all of my blood work, liver enzyme levels, and key information - like pathology, pre-surgery MRI report, surgery report, post-MRI report and such. Gotta call around to a few departments at UCLA, get the forms for them to release the documents, then have them sent. It's wonderful that I can speak and process information! I think of how grateful I am multiple times a day, how this surgery is exponentially better in recovery. It's fantastic!! Of course there were the dark moments, but since I'm in the sun now, I don't focus on the clouds :)
Here's a sweet video that my buddy Meghan sent me from YouTube. I know that I say this a lot but.....this is the cutest video!!! My eyes started watering and I got goosebumps. These two boys are so talented, and adorable. Trust me on this one, you will love it!
I've already gone on several three mile even a couple of four mile walks with friends. In no time I'll be jogging around the lake :) I have to keep pushing the limits because I'm bored. Dan's working 10 hours a day which takes him away from the home on average 13 hours a day, and now he's working spans of 9 days in a row. I'M SO BORED. I am so grateful that Dan has a job, I remember the year and a half when he was out of work (which was perfect for nursing me to health from the first brain surgery). I feel dumb even saying anything. Maybe its because I'm jealous. I wish I could work. I can't wait to wake up in the morning, be all sleepy and groggy and rushed, and get in traffic as I drive or ride the bus to work. I can't wait to have co-workers, and office politics, and new friends, and hear about other people's lives on a daily basis. It's going to be so fun!
So here's the current deal, I am in talks with doctors at the German clinic to do the dendritic cell therapy. I have a phone consultation on Dec 4th. In the meantime, I've been trying to get all of my blood work, liver enzyme levels, and key information - like pathology, pre-surgery MRI report, surgery report, post-MRI report and such. Gotta call around to a few departments at UCLA, get the forms for them to release the documents, then have them sent. It's wonderful that I can speak and process information! I think of how grateful I am multiple times a day, how this surgery is exponentially better in recovery. It's fantastic!! Of course there were the dark moments, but since I'm in the sun now, I don't focus on the clouds :)
Here's a sweet video that my buddy Meghan sent me from YouTube. I know that I say this a lot but.....this is the cutest video!!! My eyes started watering and I got goosebumps. These two boys are so talented, and adorable. Trust me on this one, you will love it!
11.15.2012
POW
Things have been steadily improving. I chose to slightly taper off my muscle relaxers, Tylenol and Aleve. My last pills were 48 hours ago. I am no longer on any type of medicine, and I'm telling you it feels GOOD! Here's the story....
This surgery I had sutures instead of staples. Sutures are basically extremely tightly woven stitches. Mine was threaded through the skin with a very thick type of wire like material. The stitching was incredibly tight which I appreciate (it made for a very small scar), but as it was removed I could feel my scalp relax, and the pain increased into a deep throb. I'm convinced that the horrible pain was due to the sutures, then to the suture removal which caused a shift in the skin all over my head. After four days it started to get better, and then POW.
Typically, sutures and staples are taken out at around 10 days or so after surgery. Because it was my second surgery, Dr Liau scheduled me for 25 days out. It makes sense, I can only imagine that each time they saw through my skull it becomes weakened. The incision is truly beautiful, half the width of the original scar (and only slightly longer). Before the surgery Dr Liau looked at my scar and asked me if when I get a small cut, does the scar pucker along the edges? I looked at her sideways and thought to myself, 'Doesn't everyone's?' Apparently not. It's only like that for certain skin types. She's so smart!! I can't wait until I can compare the different scars from both surgeries. Hopefully Dan can take some pictures soon.
Ok. I'm pooped. I have so much going on but it takes about 2-4 hours to do a post and although I can not feel my right hand, it is starting to completely quit on me so I have to click the keys with my left hand like a chicken and its' beak. Awkward. It's hard enough to type and make my left hand hit the right letters, but when I'm tired it all goes to crap.
Here are some random photos I've taken over the last week or two...
This surgery I had sutures instead of staples. Sutures are basically extremely tightly woven stitches. Mine was threaded through the skin with a very thick type of wire like material. The stitching was incredibly tight which I appreciate (it made for a very small scar), but as it was removed I could feel my scalp relax, and the pain increased into a deep throb. I'm convinced that the horrible pain was due to the sutures, then to the suture removal which caused a shift in the skin all over my head. After four days it started to get better, and then POW.
Typically, sutures and staples are taken out at around 10 days or so after surgery. Because it was my second surgery, Dr Liau scheduled me for 25 days out. It makes sense, I can only imagine that each time they saw through my skull it becomes weakened. The incision is truly beautiful, half the width of the original scar (and only slightly longer). Before the surgery Dr Liau looked at my scar and asked me if when I get a small cut, does the scar pucker along the edges? I looked at her sideways and thought to myself, 'Doesn't everyone's?' Apparently not. It's only like that for certain skin types. She's so smart!! I can't wait until I can compare the different scars from both surgeries. Hopefully Dan can take some pictures soon.
Ok. I'm pooped. I have so much going on but it takes about 2-4 hours to do a post and although I can not feel my right hand, it is starting to completely quit on me so I have to click the keys with my left hand like a chicken and its' beak. Awkward. It's hard enough to type and make my left hand hit the right letters, but when I'm tired it all goes to crap.
Here are some random photos I've taken over the last week or two...
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| First Trip Around Greenlake In My Wheelchair |
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| Supporting Movember (outfit furnished by MMF) |
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| Bingie & I Studying Our Vocab |
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| A Love Photo From Jules |
11.12.2012
First Slog
Dan and I walked the whole lake today, 2.8 miles. Last week, Dan took me in a wheel chair. At that point I was only able to walk about 1/5 of the way. I've done a few different walks, small little ditties, but today I decided to get nuts. When I get frustrated, it fires me up. Dan took a video of my first little run (I thought he was taking a couple of pictures). I look like such a goober because I'm so exited. I figure if I'm fighting a headache I might as well take any break in pain and use it to my advantage! We drove down to the lake, grabbed a coffee, walked the lake - speaking dreams aloud, solving all of our problems and then completely inspired I decided to start slogging (jogging at the same speed of a slow walk). I didn't go far, but it spurred my belief that maybe I can slog completely around lake by the end of the month!
I need to get my heart rate going. It makes me feel alive. Today I felt more me like me in over a month. Dr Liau is truly a miracle maker. The recovery from the first surgery was massive, I'm looking forward to blowing this one out of the water!
11.11.2012
Snarky vs Snarky vs Snarky
I have been in bed....let's see...going on six hours, with no sleep. There were two moments when I was almost asleep, then I heard a very loud *CRACK*, then later a series of cracks, coming from my skull, and both times I shouted, waking Dan. I am exhausted. I'm still taking pills every four hours. My circadian rhythm is all messed up. When I lay down my head makes crackling sounds which I'm very familiar with from the first brain surgery, but I don't think I'll ever get used to it. Not to mention the right side of my body is still mostly numb.(Sometimes it'll tingle a little, the whole side, or just in specific locations.) It's weird when you can feel none or 10% of your hand, or arm, or half of your bum, or your foot. Hard to get used to that feeling. It's the feeling that I used to get just as I was having an aura - just before a seizure - that's confusing. Now I'm constantly reminding myself, 'this is just a continuous false alarm. Nothing to see here. Mentally move along.'
I've been off the anti-seizure medicine for a few days (5) and the hallucinations have not returned. My skin is clearing up as well, which is fantastic! I'm not as depressed, just completely exhausted. Even though I clearly need more pain medication to function (remember, I required the equivalent for a 300 lb person to function while at UCLA - double my weight.) I can not get anything until I can get into the Perioperative Pain Clinic at the UW, which is a maze of insanity. Call this doctor, call insurance, call the clinic, call to see if they received the fax, "it's at the call center", "call back Tuesday, Monday's a holiday". I JUST WANT THE PAIN TO GO AWAY. It's ridiculous. I'm taking muscle relaxers, one every four hours and Aleve every 12 hours, but that's it. The thing that's crazy is that the muscle relaxers don't have much of an effect. They slightly lessen the pain, but I'm still at the least a 6 out of 10, other times I'm at an 8.5. What gives? Our government and hospitals are so concerned about the over use of pain meds that they are hesitant to treat me. It's horrible. I just had brain surgery, let's get real. From the time I was released from UCLA I had 13 days of pain medication. Not even a full two weeks. I didn't abuse it. I never took more than was prescribed, I tapered off to make the pills last longer so could function for the trip home.
I hate that I feel physical pain so deeply - twice as intensely as i should. I don't want to take the pain pills. I normally don't even take over the counter medications, other my herbs or supplements, but those are to fight my brain tumor.
This is my second time at the brain surgery rodeo and both times I have had horrible lingering pain issues. A side: while I was at UCLA in the neurosurgery ICU, three days in, the "pain team" came to assess me because I was so miserable, quietly sobbing most hours of the day. The head doctor asked me a series of snarky condescending questions, then finished with, "Please don't be offended *snarky* but do you take street drugs recreationally? (I chuckled.) Because it has been widely been researched and documented *snarky* that brain surgeries are not painful. I mean, you MAY or MAY NOT be having a lot of pain." My instant response (after three days of sobbing unless they gave me extra shots of pain killers on the hour with pain pills every two hours) was in a very direct and cold voice (a voice used in less than 5% of my interactions in my 32 year life - typically reserved for a 'behind the back' rant voice), "Oh no. I am IN pain. And I understand your concern about the problems with pain pills, but I am a runner, I'm healthy, I take a lot of supplements and no. No, I am not I'm not using 'street drugs'. I'm just in a lot of pain. From my surgery."
Not wanting to be rude - what would that do, nothing - I let him leave. They assessed and upped my meds, thankfully. I wished later (always how it works) I had said to him, 'Have you had a team of specialists slice through your skill, the protective layers, the muscles? Have they dug around in your brain stimulating various muscle groups with electrodes sending electric shock waves through your body to verify which is tumor, which is brain matter? Have they differentiated between the two then physically separated, then cut, and cut, then pushed it all back together layer by layer? Have they cut out the old scar from the FIRST CRANIOTOMY stretched the skin to cover your skull, then tightly sewn the halves of your scalp back together and then call it good?'
It was a good lessen for me to remember; if I haven't been through something, I have no idea what people have gone through. Each situation is completely unique.
I'm attaching three close-up photos of 2/3 of my sutures. They are finally out! After a week of calling, faxing, and emailing every day between Danny, my dad, my mom and me, we finally persuaded UW to remove them so that I wouldn't have to make the exhausting trip back down to LA. It was a battle, but it's over. Now we just need to make sure the wound doesn't get infected. There is an "area of concern" according to nurse Ratched (at the UW - not her real name) but I'm not convinced that she's not just trying to freak me out. If it does somehow become infected (fingers crossed all will just heal from here) I will bring her flowers. So there. That makes me feel better for being snarky about the snarky nurse. Ok, I'm going to go try and read some of my Jack London Collection. Never read his stuff, but his name sounds familiar. Thanks LK for the loaner!
I really am sorry for being so snarky. I go back and forth between too much pain, or just enough pain to make me crazy. Silent tears, sobbing, insomnia, dull monotonous never ending pain on the left side of mg head. (Imagine Chinese water torture with ice water or scolding drops, with oscillating internal sword fights and brick breaking. It's kinda like that.)
I've been off the anti-seizure medicine for a few days (5) and the hallucinations have not returned. My skin is clearing up as well, which is fantastic! I'm not as depressed, just completely exhausted. Even though I clearly need more pain medication to function (remember, I required the equivalent for a 300 lb person to function while at UCLA - double my weight.) I can not get anything until I can get into the Perioperative Pain Clinic at the UW, which is a maze of insanity. Call this doctor, call insurance, call the clinic, call to see if they received the fax, "it's at the call center", "call back Tuesday, Monday's a holiday". I JUST WANT THE PAIN TO GO AWAY. It's ridiculous. I'm taking muscle relaxers, one every four hours and Aleve every 12 hours, but that's it. The thing that's crazy is that the muscle relaxers don't have much of an effect. They slightly lessen the pain, but I'm still at the least a 6 out of 10, other times I'm at an 8.5. What gives? Our government and hospitals are so concerned about the over use of pain meds that they are hesitant to treat me. It's horrible. I just had brain surgery, let's get real. From the time I was released from UCLA I had 13 days of pain medication. Not even a full two weeks. I didn't abuse it. I never took more than was prescribed, I tapered off to make the pills last longer so could function for the trip home.
I hate that I feel physical pain so deeply - twice as intensely as i should. I don't want to take the pain pills. I normally don't even take over the counter medications, other my herbs or supplements, but those are to fight my brain tumor.
This is my second time at the brain surgery rodeo and both times I have had horrible lingering pain issues. A side: while I was at UCLA in the neurosurgery ICU, three days in, the "pain team" came to assess me because I was so miserable, quietly sobbing most hours of the day. The head doctor asked me a series of snarky condescending questions, then finished with, "Please don't be offended *snarky* but do you take street drugs recreationally? (I chuckled.) Because it has been widely been researched and documented *snarky* that brain surgeries are not painful. I mean, you MAY or MAY NOT be having a lot of pain." My instant response (after three days of sobbing unless they gave me extra shots of pain killers on the hour with pain pills every two hours) was in a very direct and cold voice (a voice used in less than 5% of my interactions in my 32 year life - typically reserved for a 'behind the back' rant voice), "Oh no. I am IN pain. And I understand your concern about the problems with pain pills, but I am a runner, I'm healthy, I take a lot of supplements and no. No, I am not I'm not using 'street drugs'. I'm just in a lot of pain. From my surgery."
Not wanting to be rude - what would that do, nothing - I let him leave. They assessed and upped my meds, thankfully. I wished later (always how it works) I had said to him, 'Have you had a team of specialists slice through your skill, the protective layers, the muscles? Have they dug around in your brain stimulating various muscle groups with electrodes sending electric shock waves through your body to verify which is tumor, which is brain matter? Have they differentiated between the two then physically separated, then cut, and cut, then pushed it all back together layer by layer? Have they cut out the old scar from the FIRST CRANIOTOMY stretched the skin to cover your skull, then tightly sewn the halves of your scalp back together and then call it good?'
It was a good lessen for me to remember; if I haven't been through something, I have no idea what people have gone through. Each situation is completely unique.
I'm attaching three close-up photos of 2/3 of my sutures. They are finally out! After a week of calling, faxing, and emailing every day between Danny, my dad, my mom and me, we finally persuaded UW to remove them so that I wouldn't have to make the exhausting trip back down to LA. It was a battle, but it's over. Now we just need to make sure the wound doesn't get infected. There is an "area of concern" according to nurse Ratched (at the UW - not her real name) but I'm not convinced that she's not just trying to freak me out. If it does somehow become infected (fingers crossed all will just heal from here) I will bring her flowers. So there. That makes me feel better for being snarky about the snarky nurse. Ok, I'm going to go try and read some of my Jack London Collection. Never read his stuff, but his name sounds familiar. Thanks LK for the loaner!
I really am sorry for being so snarky. I go back and forth between too much pain, or just enough pain to make me crazy. Silent tears, sobbing, insomnia, dull monotonous never ending pain on the left side of mg head. (Imagine Chinese water torture with ice water or scolding drops, with oscillating internal sword fights and brick breaking. It's kinda like that.)
11.05.2012
Mal Meds
My medications have been making crazy. For the past week I have been confused about what specific meds are causing problems. As my pills run out, it's easier to pinpoint. I have been hallucinating, talking to myself and to imaginary people when I'm alone. Now that I'm back with Dan, he caught me in an episode, so he emailed Dr Liau. He also talked to her about the fact that my whole face is covered in painful blisters. I'm not fairing well, constantly in pain (no more pain meds), blisters all over my face - spreading across my body, hallucinations, serious depression, suicidal thoughts, it's so awful.
Dr Liau has me tapering off the anti-seizure medication early,thankfully. All we can hope for is to get back to normal, back to the happy place where I normally live. I am barely hanging on, at the end of my rope, feeling crazy, LITERALLY psychotic and very much in pain.
Sorry to my friends, but I don't want to see anyone. Please don't stop by. I love you guys, but I'm not ready.
Dr Liau has me tapering off the anti-seizure medication early,thankfully. All we can hope for is to get back to normal, back to the happy place where I normally live. I am barely hanging on, at the end of my rope, feeling crazy, LITERALLY psychotic and very much in pain.
Sorry to my friends, but I don't want to see anyone. Please don't stop by. I love you guys, but I'm not ready.
11.01.2012
Future
This little bird can now fly, her leash has been cut! I could have cut my hospital tag earlier but it felt like an accomplishment, a sweet victory.
I have not been awake more than two hour at a time today. Somehow, the exhaustion has finally caught up to me. It's been tricky because in order to sleep I have to be sitting up and I can't lean on anything against my head, it's too painful, so it becomes a riddle, a challenge to figure out how to get comfortable. Happily, today I've become so exhausted that I will just rest my face down on my chest and pass out. I need as much sleep as I can so that I can make it through tomorrow. I should be home sometime around 9:30 pm or so.
Of course I can't wait to see Dan, to be home and cuddle my kitty, but I'm also nervous. Dan will be working 60 hour weeks and I'll be managing myself. My parents have been cooking for me, helping bathe me, and taking care of all of my pills and such. I'm going to need to a system figured out for all the serious pills, eight times a day, reminding to eat, figuring out WHAT to eat, etc. I have a feeling I'll be eating a lot of apples :) Easy stuff.
I just ordered vocabulary flash cards and a math work book from Amazon, it should arrive early next week. I figure I can spend a couple of hours each day freshening my brain :) It sounds fun to me, I'm pretty excited. I know I'll spend most of the next month on the couch or in bed, and I don't want to be mentally bored.
We'll be looking into other treatment options soon, but after that I'm already excited to think about the future, maybe even consider taking more courses. Perhaps formal schooling of the Restricted Ketogenic Diet. Who knows!
10.31.2012
Decade
Today I was able to see one of my best friends from my college days, my Pi Phi pledge sister Jen. It had been 10 years! It was fantastic, and crazy, and I'm so grateful that she was able to stop by and laugh and hug. My time with my girl friends (there were six of us that were very close - all from Texas) really shaped me from my late teens to early 20's. It was so much fun catching up, I even actually got dressed in real clothes and put makeup on. I felt feminine. Womanly.
Texas was such a life molding experience. I learned so much about myself, made some errors, evolved, and had a lot of fun. In fact, I keep threatening to take Dan to a TCU football game one of these years :) I can barely wait to show him around Fort Worth. Gotta get him a pair of sweet boots! I can not believe it is my 10 year college reunion. Geez.
Time just keeps flying by, but I don't feel old. If anything I feel younger and younger and it's not because my mother is bathing me. It's a youthful energy that can not explain.
I should get back to bed, I have been carefully editing my post for errors and it takes forever. My sleep patterns are still pretty horrendous, but it will all iron out in the end. When I'm really tired, I will just dip my head down to my chest and pass out. It's kinda a sweet trick.
10.30.2012
Go For The Best
Good Morning World. I'm giddy again :) All I can think about is my wonderful life, I've been spiked with endorphins, I want to dance and celebrate and laugh - it;s so fun! Of coirse, I can't get too crazy or I'll hurt myself, no shaking the brain. I can not believe I did it, another brain surgery. SWEET! I even have some hair! I keep welling up with hapy tears because I;m alive, it is just so thrilling. It's hard to explain, but when you go in for a brain surgery, you walk into it knowing that you could die, it's a risk you are willing to take. It's not a "you could hit by a car" it's literally step by step, into the hospital, needles, IVs, anasthsia talking, lights out. You don't know what happens after that. Once you make it out you are still in dangerous water, there are a mirad of issues that come up, like my blood clot last time or the hemotoma. As the hours fall away, you start to watch and confidence grows, and when they finally release you from the hospial you get to emotionally jump for joy. You realize that you're coming into the clear. It's thrilling!! That you/'ve done it. Even when I was sobbing from pain i was ecstatic to be alive, i kept telling Dan that I can handke the pain, it means I'm here, I did it, I survived.
It's very hard to explain the way it is. To be nauseously sick, throwinng up in pain but happy is wildly confusing. My heart is just so happy. I am more appreciative after this surgery, even more grateful. I want to hug strangers, give away all of my posessions, help peopkle, thank people, get crazy and share how i feel. I haveto takeit easy though, dont want to cause an overload like a seizure.
I dint mind if i have deficits, i don't mind if im more "simple" i don;t mind if i look like a cavewoman, i dont mind the lack of sensation or physioca.l deficits, i am just HAPPY. this is just such a gift. To be happy. I remember never being happy, never content before the tumor. Never satisfied, always needing to do more, accompk\lish more, i was never happy w9ith myh looks, silently barrading myself, being my own mean girl. What's the point in that? What a B. I am so grateful that I have walked away frim that place, that I assess myself on a deeper level. I have always been vain, always wanting to be prtty and thin, and I still care, but more I carea bout being a good friend. I don;t know why im rampling, iguess its because im just so happy. By me not focusing on my outsdie as mucy, people are loving me deeply, just for who i am. it is the most amazing gift anyone could give and it makes my life so beautufil.
I still dont know what my role is on this Earth, but I am sure as hell having a blast enjoying the ride :) This tumor thing isn;t that bad. I continue to learnso much, make amazing friends, meet brillant doctors, explore cuttng edge research, and go amazing places, all in the name of survival. Oh shoot, gotta go to NYC to check out a Dr. Dang it, I;ve got to head to LA and meet with a surgeon. Seriously, it'sawesoe. I am so gratefl f9r the fundraising, thatnk you for helping me. thyank you for encouraging me to go for the best care, to just do it, not give up, shelll the money and reward myself with the ultimate healthcare. it can feel gluttonous to consider Germany, but then i think, dom't be foolish little girl, pay the money, get the treatment, the whole point of this journey is to to heal and survive :)
You guys, we are on the right track, and we have everything goijng for us. Life is exciting!!
10.29.2012
Beautiful Bruises
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| Right Hand |
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| Left Hand |
Today, I walked three blocks, rest for 15 minites and walk slowly back home. As I returned home from my walk I noticed my right arm wilted, as my energy waned. I started swirving like a drunken deer, and then I needed to be bookended by my parents so that I wouldn't fall over. Made it though :) I contined home, walked in the dooor, fell onto the couch, tried to reach my water glass with my right hand (always pushhng to use the bad hand) and just after taking a big sip, I watched my hand hand reease the glass. Shattered it. I drop everything. During meals I drop my utensils, time, after, time, never stopping until I'm done eating. My rule is that if I want to eat I have to eat using my right hand. I have to earn it. half way throigh the day I have a hard tme picking up myh right arm, so i go takea nap.
I will be fying home Frday with my parents. Fior niow I'm trying to rest, take small walks, be out and hear sounds, bright lights, for a few minutes eatch day . the travel day will be intense and exhausting. i can't standfor long times, i hop[pe i get better so i dont have to use a wheelcheair. I woild be nice to be wheeled and keep my eyes closed too thoigh. We'll see how it goes.
I'm glad I have so much time to recouperate down here. Dan is already back at work doing 6 days a week 10 hour days. He's really busy and i still need help. My mom is bathing my head, I sit in the bath and laugh, compare myself to my three year old neice. I;m glad I have such a close family where i can count on my mom to bathe me, my dad has fed me, and Dan does everythinng between. If I hadn;t gone through this before i dont think i would have handl.ed it this well. im more confident in how i will progress, that this is just phase.
Im still bummed about the lack of personalized vaccine, but if ii have to get to germany, that;s what ill do. I have acceess to my tumor and Dr Liau is still going to be my doctor. YAY! She will follow me. We;re on the right path.
Ok. So pooped. I've bitten my mouth 20 times becauseje ha;f my face feels novicaned. My body is confused and the ony thing to do is tryh and rest. pushing it has never been a good idea. Sorry im so bad abount posting. just so hard to communicated sometmes.
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| Daddy Manicure |
Nightmare
Just woke before myidmight pills, just 15 minutes early. I was crying, screaming silently, trapped in a treatment facility trying to beat this tumor. The lights were out, it was dark. People with shots and venoms and poisons lurched at me, ignoring my pleas, unable to comprehend my language, my gibberish. I screed for Dan, for mom, no one could reach me. They could hear me but it was too dark, to hard to find me, I was strapped down.
Dan flew home tonight, mom and dad are here to see me thru Friday until I can come home. I'm healing but I think there are deep fears lingering. I wish it wasn't the case. I fitfully chase sleep, and I know I need the reprieve, but even with the best intentions and hope from this process, I cannot ignore the trama my body has endured.
Ill try again, swollow more drugs, visualize fat faced kitties and furry puppies, and if all fails and nightmares prevail, I will try again because although terrifying, a good cry can heal.
Dan flew home tonight, mom and dad are here to see me thru Friday until I can come home. I'm healing but I think there are deep fears lingering. I wish it wasn't the case. I fitfully chase sleep, and I know I need the reprieve, but even with the best intentions and hope from this process, I cannot ignore the trama my body has endured.
Ill try again, swollow more drugs, visualize fat faced kitties and furry puppies, and if all fails and nightmares prevail, I will try again because although terrifying, a good cry can heal.
10.27.2012
Great, Pretty Great, and New Plan
ok. Patho,ogy. Still low grade. YESSSSS! howevery, the tumor is not with9n the density poerameters, therefore i will not ne able to get the personalized vaccine. RATS! So, now we email Dr Laiu and see if we can have my tumor tissue and take it to Germany or somethimg ajnd pay for the dendritic cell therapy out of poctet. The clinical trial has litt.e rules and if we go to germany they can give me more vaccine and stuff. its compicated, somthimg ive been researtching for about 7 months. i was obviously hopinjg the clinical trial would get it done, but we have more options. i will not give up, there is no where i wont go, thravel, exhaust optiojs. just another bump in the road. we just found out last night and it was a lot to process, but like usualy, we sort it out, talk it out, and get back on track. didn't sleep last two nights, about total of 4 houjrs.
this jojurney is wild, just when you think ypu have a plan 9t changes :) its practically hilarious, you just kee0 planning, keep learning, never stay stagnant, nevver give up, not be afraid taking chances. ASo at this point herman is TOAST. We know that the tumor always grows and there is seme invisable tumour, but we just restarted my clock! i hope it works to go to germany and do the dendritic cell therpy, focus on diet (only proven diet to combat brain cancer is ketogenic, or less severe is paliolithic - low carb, low sugar). If i keep my supplememts going, really target them so i dint get so exhsustive of so mapy pils, excercise and i will be GOLDEN!
Dr Liau was very disappointed that i dint get the vaccine, but also happy that my tumor is not worse :) we want the lowest grade, least density, least invasive, and things as\re looking SWEEEEET!! We have so many things to be happy for, im so incredibly grateful!!! i do wish we were getting the vaccine, it was the icing on the cake, but no deal worry about it, its done. on to the next. things always cange, cant really hope for definite thiings you dont really know what;s best. does that make sense? back to our never ending battle. i was pretty tired last nignt, a litt;e down becaise the clinical trail wasnlt happened for me. i just wanted thing to be easier. but know im giong to take this advantage to explore germanys clinics, the wor,d, review again all the cool treaments, and accept that my path is in credible and very fortunate. this journey keeps giving more froends, new surprises, amazing opprotunities. no complaints, seriously! thank you again for all of the love and friends. i am so much better than if ihad never had this challenge. youi guys make me a better person.
ps not to brag or anything, but i can hold a glass and drink from my right hand!!! not always, and a few mistakes, but seriously, killing it, and using a fork. definitley NOT laduy like, kinda like ogre or cavewoman, hilarious, but exciting! when recovering there is no point too proud - just celebrate.
this jojurney is wild, just when you think ypu have a plan 9t changes :) its practically hilarious, you just kee0 planning, keep learning, never stay stagnant, nevver give up, not be afraid taking chances. ASo at this point herman is TOAST. We know that the tumor always grows and there is seme invisable tumour, but we just restarted my clock! i hope it works to go to germany and do the dendritic cell therpy, focus on diet (only proven diet to combat brain cancer is ketogenic, or less severe is paliolithic - low carb, low sugar). If i keep my supplememts going, really target them so i dint get so exhsustive of so mapy pils, excercise and i will be GOLDEN!
Dr Liau was very disappointed that i dint get the vaccine, but also happy that my tumor is not worse :) we want the lowest grade, least density, least invasive, and things as\re looking SWEEEEET!! We have so many things to be happy for, im so incredibly grateful!!! i do wish we were getting the vaccine, it was the icing on the cake, but no deal worry about it, its done. on to the next. things always cange, cant really hope for definite thiings you dont really know what;s best. does that make sense? back to our never ending battle. i was pretty tired last nignt, a litt;e down becaise the clinical trail wasnlt happened for me. i just wanted thing to be easier. but know im giong to take this advantage to explore germanys clinics, the wor,d, review again all the cool treaments, and accept that my path is in credible and very fortunate. this journey keeps giving more froends, new surprises, amazing opprotunities. no complaints, seriously! thank you again for all of the love and friends. i am so much better than if ihad never had this challenge. youi guys make me a better person.
 |
| Serious Cavewoman! Look out |
ps not to brag or anything, but i can hold a glass and drink from my right hand!!! not always, and a few mistakes, but seriously, killing it, and using a fork. definitley NOT laduy like, kinda like ogre or cavewoman, hilarious, but exciting! when recovering there is no point too proud - just celebrate.
10.26.2012
Oh mighty have fallen - poo saga contines
so frusted havnt been able to poop cover a week!!!!. Wish i didnt have to talk about -in but that's the big problem. every const0atioun pill, every max dose, prue juice, two kale smoothy, a day, powders, veggies, EVERYTHING; lots of water, my body so frustated. so gross. and pain. RATS. dan went to get more options. while i was in hospital the doctors said they were givng me [pain killers for doses for a 300 person. my complely warped. they could not believe how much pain i edure and toerate and not be knock out. iwould silent sob through the night, then nurse feel sobad, up my dosage. crazy! it makes sense that i need three thimes the dose. my mody is all out of wack.
not sleep from paing in the stomack. just lay in bed all nigth waiting. cramps and cramps, unreal.
sorry to tell you so much. hope its okay.
if my bowels are my biggest problem its kind of funny, except it makes me sooooo cranky :) SO CRANKY!!
on anther side my right side is movi g more, its greatT! i am rigbht anded and trying to type with both hands, this is new! coo! my body is still weird, ican see mybody and arms andlegs, but i dont recagn9ce them. like a out body experiuence. like a third person, or i see dan but i see him but backwards. almosrt ipossible to explain. like im a sciece prject. totaly amazing!
im working on randlm stuff, fun to prgress :) wish i could tell everthing maybe in time! tigle in arm and leg ist great! even when its uncomfortable. i will do it! right after a nap. the constaption has me stumed though :) so gross but ultimately the biggest thing in my problems. ps i speak way better than i type. that makes me very hapy that people understand me speak9ng. sweet!!
not sleep from paing in the stomack. just lay in bed all nigth waiting. cramps and cramps, unreal.
sorry to tell you so much. hope its okay.
if my bowels are my biggest problem its kind of funny, except it makes me sooooo cranky :) SO CRANKY!!
on anther side my right side is movi g more, its greatT! i am rigbht anded and trying to type with both hands, this is new! coo! my body is still weird, ican see mybody and arms andlegs, but i dont recagn9ce them. like a out body experiuence. like a third person, or i see dan but i see him but backwards. almosrt ipossible to explain. like im a sciece prject. totaly amazing!
im working on randlm stuff, fun to prgress :) wish i could tell everthing maybe in time! tigle in arm and leg ist great! even when its uncomfortable. i will do it! right after a nap. the constaption has me stumed though :) so gross but ultimately the biggest thing in my problems. ps i speak way better than i type. that makes me very hapy that people understand me speak9ng. sweet!!
10.25.2012
An extra 30 min
Pills are ever 3hr and I had a glorious nap! 1 1/2 hour. Naps are amazing. I don't ever fight them at all. I love it. I get giddy. So here is a cool thing, Dr Liau spend an extra 30 min after surgery pulling my skull really tight so scar would be persice and clean. Don't know if you know that my first Dr Sibergeld used staples and then had to open my brain again. It wasn't as presion. Wide scar and dr Liau couldn't leave it. I immediately notice how clean and dainty the scar and dr Liau meekly smiled, appreciated I noticed. She was the one who shaved me, so clean and gently. She cared about my brain, my scar, the woman had her dainty fingers in my brain. That is amazing. A gift. She puts things better than they were, that is a wonderful, a great to live life. I have so much gratitude!
Hope tomorrow we will get final pathology. Always little nervoous, but t am truly happy! Thank you for all the love and encouragement. I am having so much just nap and vist with Dan. I am surprised take this long recover but no pressure hear :)
I cannot tell you how much I love you all!! Another fabulous day. The aminging things I'm able to do. So cool!! I sound simple but I'm thriving :) sometime maybe simple the best
Hope tomorrow we will get final pathology. Always little nervoous, but t am truly happy! Thank you for all the love and encouragement. I am having so much just nap and vist with Dan. I am surprised take this long recover but no pressure hear :)
I cannot tell you how much I love you all!! Another fabulous day. The aminging things I'm able to do. So cool!! I sound simple but I'm thriving :) sometime maybe simple the best
Dream Dog
When Dan slep between pills I have fun laugh at cute things. This my favorite right now. It is so sick I almost throw up its so awesome! Hope enjoy. I sleep lots but sometime stomach huts. Always fogey when I see distractiod. Dan and I cute kitties and dogs and laugh for ever. Chek this out. I want it soooooo bad :D
Sweet dreams!
Sweet dreams!
10.24.2012
Jess Post
Have so much to say but still my miatitions. Lot of auto wrds is handy :) Dan is so kind and patient. Mom and and dad and Kaal home for now. Mom dad back Sunday and dam go hope. Wish I could express explain thigs. I always have things to say :) this will this is be tough I though! Only use left right hand, so tricky. Right foot weark and unsteady, lots of naps, but still begetter every happy. I know u must sund funny bit just a bung in a road! I'm so happy,I do this before and I do it again. Wish you could see hope hey me famy feed even wipe me. Embasr and I cry once. I very private with bath stuff, but of coure y had my period. When rain it pours! I fart start time first Dan. Cry and cry but oh we'll :) life oh on.
My crazy life :) try to tell a little little so you can imagine. Hope I didn't say too much, to aphic. I'm surprising myself saying so much. Still happy though :) because my family and dan
so make so happy. They are amazing!!
Sorry still rumbled but great to challenge :) still can't believe toot. Bamn. Honeymoon over ....
My crazy life :) try to tell a little little so you can imagine. Hope I didn't say too much, to aphic. I'm surprising myself saying so much. Still happy though :) because my family and dan
so make so happy. They are amazing!!
Sorry still rumbled but great to challenge :) still can't believe toot. Bamn. Honeymoon over ....
Address
People have been asking for the address to get things to Jess. Although she wanted to make sure everybody knew she didn't need anything and that nice comments were enough, here it is.
Globe Homes and Condos INC
1231 Electric Ave
Venice CA 90291
This is the property management office, and they bring us anything that comes, so make sure you have Jess's name somewhere on there.
Globe Homes and Condos INC
1231 Electric Ave
Venice CA 90291
This is the property management office, and they bring us anything that comes, so make sure you have Jess's name somewhere on there.
Feet In The Sand.
We had another successful night of keeping Jess's pain to a minimum. She's getting good sleep, even if its only in three hour segments. Today Jess went on her first walk outside of the hospital. She was determined to get to the beach and get her feet in the sand. The beach is roughly one half block away but I've seen Jess run 10K's with more ease. It definitely wore her out but she was very excited to accomplish it. Unlike the hospital, the sidewalk and sand required much more concentration and dexterity. She was napping within 20 minutes of getting back. It is a delicate line between beneficial rehabilitation and overworking to the point of detriment. Having gone through a similar, if not more severe, situation with the first surgery we have a better understanding of the saying "it just takes time". We now understand that some of Jess's deficits will return on there own time frame and that we do not have much control over them. Things that came back quickly last time may be the last to come back this time. Everything seems to be coming back at an expected rate, and for the most part we are very excited about Jess's recovery. She still has lingering cognitive issues with word finding, spelling and reading. As well as some physical issues regarding her right arm, right leg, and general coordination. With that said, all these issues are steadily improving, and I truly believe they will come back to the same level they were prior to surgery. Dr. Liau actually said Jess's right arm had more response after the resection, and that it may improve over pre-surgical form. Thanks again for all the support you all have provided, even such things as friends picking up Jess's parents at the airport. All of this support adds up to make Jess's situation as easy as possible. Thanks again. 
10.23.2012
New Home
I'm sorry that last nights blog didn't get published till this morning. I tried to blame it on the blog, but I'm now convinced it was user error. Of course shortly after I finished that post yesterday everything changed. Around 6:00pm last night we were asked if we wanted to go home or stay another night. This caught us by surprise because we were under the impression that we would be at the hospital throughout the evening. We all agreed that it would be better to get Jess to a place where her medication will be administered with the punctuality necessary to maintain the desired level of pain tolerance. With a ratio of 3 nurses (Bob, Bonnie, and myself) to one patient (Jess), as compared to UCLA with a ratio of 1 nurse to 5+ patients, we knew Jess would get her medication on time and consistently. We are in our rental home now and Jess is doing extremely well. Her pain has gone up and down but not anywhere close to what was happening at the hospital. I was forced to relinquish my nursing duties, and although I tried to convince everyone I wasn't tired, apparently I snored throughout my entire shift off. I'm only mentioning this to beat Jess to the punch, as i'm sure she was going to tell on me later, and with utter delight.
She is doing much much better than at the hospital now. This place is much more peaceful and relaxing then the hospital, and she is thriving from it. Walking to and from the bathroom unassisted, eating real meals, teasing her father, and generally being a happy person. Every half hour or so she wants me to continually check and see if there are new comments from the blog. They bring a smile to her face every time. I truly can't thank everyone enough.
She is doing much much better than at the hospital now. This place is much more peaceful and relaxing then the hospital, and she is thriving from it. Walking to and from the bathroom unassisted, eating real meals, teasing her father, and generally being a happy person. Every half hour or so she wants me to continually check and see if there are new comments from the blog. They bring a smile to her face every time. I truly can't thank everyone enough.
Jess try
It 2:19 morn. Can't write. Read no. This hard. Long road but I do better. So try. So try. Pills every three hour for pain, seizure, steroids, this long stuff. Long long road. Sad. I'm alive and that more that I hope more I hopeote. 
Update V (didn't publish last night)
We are still at the hospital, and most likely will be going home tomorrow. Yes we have heard this before but we feel like we're really close to getting the pain management figured out. It's frustrating because it was a solution that had been agreed on by a Dr and us some time ago, but was somehow lost in the shuffle of doctors and nurses or stopped by hospital politics. Things went very well throughout the night and Jess's pain was kept In check. Unfortunately early this morning the medications Jess is currently taking all tapered off within 35-40 minutes of each other, and although she took her next round of dosing, her pain had come back too severely for the medication to help. This is one of the main issues facing Jess. The medication's effectiveness is greatly reduced if it is administered while Jess is in a high amount of pain. On the other side, if the meds are administered while Jess is relatively comfortable they make her feel much better and last much longer. There was slight adjustments made to Jess's dosing schedule that we are all very optimistic about. Hopefully this new regiment will be successful throughout the night and she can be released in the morning. She is comfortable right now and as long as we stay on top of the schedule I believe she will remain comfortable throughout the night.
*Special Note From Jess*
Jess wanted me to make sure everyone knows she is having trouble with her words and typing coordination, which is not allowing her to respond to people in person. I will do my best to channel Jess's voice and respond to people, but please forgive my tardiness. Thanks again for all your support.
*Special Note From Jess*
Jess wanted me to make sure everyone knows she is having trouble with her words and typing coordination, which is not allowing her to respond to people in person. I will do my best to channel Jess's voice and respond to people, but please forgive my tardiness. Thanks again for all your support.
10.21.2012
Update IV
We are still at UCLA and Jess is currently doing very well. Previously there had been talk of her being released this morning, but we are still attempting to gain control of her pain medication. The main issue is that Jess's pain management is dependent upon a drug that is administered through an I.V. In order for Jess to be released she needs to be on a pain management regiment that can be administered in pill form, thus allowing us to administer her medication at home. We attempted to reduce her I.V. medication last night, and ended up in an whirlwind of pain and frustration. I will allow Jess to revisit the ordeal in detail once she regains control of the blog. To sum it up, protests were made, higher ups were talked to and a nurse was barred from entering our room. It was very disappointing and frustrating for Jess's family and I, and extremely painful for Jess. We are now taking a different, more gentle, approach to the reduction/changing of her pain medication. Once we have a successful regiment to control Jess's pain we will be allowed to leave the hospital.
At this point I would like to send out a special thank you to Tia. She is a close family friend to the Oldwyn family and helped guide us through a tough situation last night. You saved Jess a tremendous amount of pain, and for that we will always be appreciative. Thank you.
*Special note from Jess*
Due to my ineffective blogging, I failed to mention that Jess received a "total and complete resection". She wanted to make sure everybody knew that.
At this point I would like to send out a special thank you to Tia. She is a close family friend to the Oldwyn family and helped guide us through a tough situation last night. You saved Jess a tremendous amount of pain, and for that we will always be appreciative. Thank you.
*Special note from Jess*
Due to my ineffective blogging, I failed to mention that Jess received a "total and complete resection". She wanted to make sure everybody knew that.
10.20.2012
Jess Update III
Jess has been moved out of the ICU and into her own room. The move was tough as we had to adjust to new nurses and new routines. She still has an significant amount of pain to deal with, but we managed it well enough for her to get some sleep last night. She says she got about five hours, but I would predict three, maybe four tops. She is having trouble with the dexterity and coordination of her right hand. It is a similar condition to what she dealt with after the first surgery. It is not as significant of an limitation but still something that requires a tremendous amount of attention. She can communicate and read effectively, but has found a problem with writing. She has difficulty identifying the correct letters to create the words she is searching for. We have every confidence these issues will subside in correlation with the swelling surrounding her brain. The deficits are serious and extremely scary, but at the same time they are much less intimidating then the deficits she faced after the first surgery.
Last night, or maybe early this morning, Jess fell asleep reading emails and text messages from the vast amount of people supporting her. The support she gets is a continual inspiration and source of happiness for her. I cannot thank all of you enough.
Last night, or maybe early this morning, Jess fell asleep reading emails and text messages from the vast amount of people supporting her. The support she gets is a continual inspiration and source of happiness for her. I cannot thank all of you enough.
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