Wednesday, April 13, 2016

The Alternative/Conventional Internal "Battle"

I know I will never get by all the skeptics, but I want to put something straight for those who think I'm "deciding to die" by doing alternative therapies (and think my husband should be "putting his foot down" and forcing me).

I am not willy nilly looking at people selling snake oil and impossible promises. I am researching -through NIH articles and other such reliable sources, as well as other doctors consultations and recommended web information -  BOTH conventional and alternative therapies. I have two oncologists. I have spoken with both of them. 

Conventional Options:

Stem Cell Transplant  - this is not a choice I will take. It NEVER has been. I have done immense amounts of research (We ALSO chose to not put our child through this treatment - we were told later it was a good thing because it WOULD NOT have worked). This is not a point of discussion. 

Brentuximamb and Vendotin - This is an approved drug that is a chimeric monoclonal antibody connected to a chemotherapy. This means that it is less toxic to healthy cells than normal chemo, but still comes with some side effects that are typical of chemotherapy and has the potential to induce other cancers later. This drug has been shown to put patients into SHORT TERM remissions (average is about 6-9 months - this is directly from data from my oncologist!) - and is often used as a prep for stem cell transplant. This is my emergency option as it is approved and I can be put on it within about 48 hours if I need to be, and it can be done by my home oncologist and hospital. 

Nivolumab and other PD-1 inhibitors - This is the ONLY conventional drug out there that I have any true interest and faith in. I am not a fan of the trial designs I have seen, nor am I qualified for many of them as I refuse to do a SCT. This drug still has some very dangerous side effects attached to it, and the trials have an overwhelming overuse of radiation containing scans that I am not in favor of. I have spoken to my oncologist at Dana Farber (the one who is in charge of these trials for Hodgkin's). This is the only drug that he recommends for me based on my history and beliefs. THERE IS NOT AN OPEN TRIAL FOR THESE DRUGS IN BOSTON CURRENTLY - THEY WILL OPEN SOME MORE IN 3-6 MONTHS. So there's that. It will be there down the line. This is NOT a non toxic therapy, although it is less toxic than any of the others currently available. It also has not been used on Hodgkin's for long enough to have "cure rate" statistics - though it is showing promising remissions in many many patients. (to my knowledge of personal acquaintances - the longest I have heard was 1 year 8 months and going strong). 


Alternative Options:

Tong Ren - Based in traditional chinese medicine, and with a focus on cancer as a metabolic disease (which it is) and a blockage of bioelectricity transferring properly through the body, this is the treatment that has been keeping me going for the past 2 years. The practitioners have been practicing this system for over 25 (if not over 30) years and have had amazing success with many many many many cancer patients. (I watched a girl with DIPG - a tumor that has a 0% cure rate with conventional therapy - get better in two months and start going back to her normal life!) There are patients there who should have died ten years ago (in fact one was saying that he is the ONLY person with his sarcoma left alive since he was diagnosed 10 years ago compared to his oncologists other patients who did chemo). A doctor who now works at Tufts University - Dr. Michael Levin (who was healed as a child by Tom Tam, the director and creator of the Tong Ren system) - is now putting this into true study on cancer. He is about 20 years behind what Tom is doing at his centers. http://ase.tufts.edu/biology/labs/levin/research/presentations.htm

Hyperthermia - Hyperthermia (which means “elevated temperature”) destroys cancer cells by raising the tumor temperature to a “high fever” range, similar to the way the body uses fever naturally when combating other conditions. In the US, this is FDA approved for some cancers to be done in conjunction with other conventional therapies to increase their effectiveness. In alternative centers it is used by itself as well as in conjunction with other anti-cancer treatments. It can also have a synergistic action with a Ketogenic diet as it increases the ketones in the body. 
http://www.cancer.gov/about-cancer/treatment/types/surgery/hyperthermia-fact-sheet

Ketogenic Diet - A very low-carbohydrate, high-fat, adequate protein diet. Properly administered, it will decrease circulating glucose and increase ketone bodies, which are a good alternative source for fuel in our bodies and are produced when the liver breaks down fat. The goal is to starve the cancer of it's preferred fuel source, glucose. Cancer cells cannot metabolize ketones for fuel. 
http://www.maxloveproject.org/ketogenic-research-summary
http://www.nutritionjrnl.com/article/S0899-9007(12)00186-4/pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001676/pdf/brjcancer00506-0050.pdf

Cannabis Oil - Marijuana in oncology may have potential for use as an antiemetic, for refractory cancer pain, and as an antitumor agent. However, much of the data are based on animal data, small trials, or are outdated. Only recently has cannabis become legal in many states, and it still is not completely cleared at the federal level. This (in my opinion) inhibits medical studies. Other information and studies I have found are using SYNTHETIC and derived individual cannabinoids, rather than whole plant or oil derived from whole plant, which (in my opinion) defeats the purpose of studying as synergistic effects of the over 80 cannabinoids found in marijuana will have much to do with its effectiveness and anti-tumor actions. It is proven to help with tumor pain and appetite stimulation - two things that are beneficial to any cancer patient (although much of my pain is gone, I could use to eat more most of the time). There are many groups who have seen evidence of anti-tumor effects in their members and patients. 
http://oncology.jamanetwork.com/article.aspx?articleid=2504173
http://www.cureyourowncancer.org/how-cannabis-oil-works.html
http://www.ncbi.nlm.nih.gov/pubmed/12091357

Massage - We all know that stress can be a major contributor to cancer growth and that reduction of stress is a huge component to healing. I don't think I need to post any articles on this one. Massage = relaxation = lower stress. Enough said. 

I am sharing this in an effort to explain to those I don't speak with often what I am doing and why and how I have come to my decisions. It's not about debating evidence, or seeking advice, it's about sharing my pathway on this journey and allowing others to understand my footsteps. Thank you to everyone who has continued to support our family through this time. We are truly grateful and love you all. 

If you can support my expenses while going through this journey, please consider a donation using the button at the top right corner of my blog, or you can contact me for other options (or see the below blog post). 

Monday, March 21, 2016

Some Progress….

So if you missed the Facebook update I posted today, here's what it said….

Ok - I'm officially in Ketosis, the lymph node in my armpit is like half the size it was, the one pushing on my liver has gone down enough that I can lay on my stomach comfortably again, and besides the fact that my muscles need building up, I have enough energy to be a semi functional person.
So here is my goal. For Saoirse's first birthday, we had a party in the summer - we called it "saoirse's 1 and kezia's done!" This summer Lochlan turns three. This year's party is going to be "Lochlan's 3 and kezia's cancer free!" - that's the goal. Cancer free by July - that gives me just about 5 months. Let's do this!!!


I'm still experiencing some pain in my hip and lower back which is both muscular and disease related, but hopefully that will begin to subside as I keep making progress - and when I get my medical cannabis license all sorted out. 

I updated my other post talking about what other things I was working on, and I will put it here as well so you can see what measures I'm taking to combat my disease - now that I'm focusing wholly on my health as the first priority. (I keep kicking myself that I didn't put myself first sooner.) 

Thank you so much to those who have donated and supported me through this so far. I have a ways to go, but I am heading in the right direction it feels like. Any support you can give - either donation or other needs - I greatly appreciate it. Please share with anyone who you think could be of support for me during this time. 

Immediate needs:

$125 graciously the local Y has donated a 6 month membership for me.
     My body is giving me a hard time about moving around. My muscles are just not keeping up. Swimming would be great exercise for me to keep my lymph moving while supporting my body weight.

Far Infrared Mats: $750 I was able to use donations to date to purchase the mats. Thank You!
     Hyperthermia therapy is a great way to systemically kill cancer cells. I have done a TON of research on this - and it's one of the therapies included in the comprehensive treatments that are done at the centers on the west coast. I can start this at home with far infrared mats. (They have to heat up to above 60 degrees Celsius to be effective, which is why the cost is so high. I have talked directly to this company's distributor and received documentation about the testing that was done for these specific mats.) They will also help relieve some of the chronic pain that I have been experiencing. 

Medical Cannabis: $TBD (waiting on call back for pricing from dispensary as well as license processing)
    I have been dealing with a fair amount of discomfort, and some pain - especially at night. Pain medication has helped, but it decreases my appetite and keeps me from eating enough food to stay healthy. Massachusetts is a legal medical cannabis state, and I have found a local dispensary that can help me with both pain management and appetite stimulation, as well as anti cancer action using cannabis oil. I was also recommended (by the CannaKids organization) to a consultant who can help me pick the exact strains that will be most effective for me personally. (Half hour consult - $75/ Hour consult - $150.) Cannabis has a synergistic effect with the ketogenic diet. 

Ketogenic Diet: $200 / wk
    I have found a great cookbook and a couple support groups to help me with doing this diet as a treatment for cancer (se below for more info on my choice on this). Groceries for the recipes have added quite a bit to our grocery bill. Help with that cost is greatly appreciated as well. 

Massage: Gift Certificates
   Massage is something that I definitely need. My stress level is quite high, and although I have been working to find ways to de-stress, massage would be great. I currently have three gift certificates that I will be using with cancer certified massage therapists. 

Lymphatic Drainage Massage/Myofacial Release: $TBD
    I am looking into this currently. I have been recommended a local practitioner and will discuss with her about my condition and her recommendations. More soon on this. (This may not be an option - I have to consult with my oncologist about safety) 

TO DONATE:
PayPal:
Bank:
Cancer Treatment for Kezia
℅ Peoples United Bank
1 Conant St.
Danvers, MA 01923

Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923

*The rest of the costs I will find out about within the next week or so. I will update this post as that info becomes available to me.* - I have heard from one center - I was not impressed with their intake, and concerned about the information. The second center has not yet responded with a consult date.

Lots of people have asked for ways they can help us. Other than donating to help fund the treatment, and sharing this post so that others can offer their support, there are some things that would be helpful to us at home. Mike has been a saint in basically taking over running our entire life. He not only runs CareAline every day, he takes care of Lochlan, cleans the house, cooks our meals, does all the errands, and takes care of me. If I can take some of those things off his plate, I know it would help him out a lot. (I'm pretty much useless these days)

Prepared Meals:
I am on a very specific diet - the Ketogenic Diet. I have done a LOT of research on this too, and have decided to get my body into ketosis to help starve the cancer cells and make treatments more effective (this is a good idea for ANY cancer patient - alternative or conventional therapies). This diet is very time consuming as it basically eliminates all processed food and requires a lot of cooking. The cooking isn't difficult, it's just constant. If anyone is on this diet and wants to help me figure out a good flow of cooking, I'd LOVE the help. If anyone wants to make a few meals that we can have on hand to heat up, I can point you in the direction of some recipes (or you can google or pinterest for them). I try to avoid too much dairy, with the exception of good grass fed butter (kerrygold rocks!), and too much meat. 

Help with Lochlan:
Unfortunately, Lochlan is getting a lot of TV time here. I can do more sedentary activities with him on good days (stringing beads and play dough are some faves), but I can't really get out and run around with him. I just don't have the energy these days. Thursday mornings are our highest need time. I go to treatment in Haverhill - I leave the house at 7:30 and don't get back sometimes until 11 or later. I always feel like I'm in a rush to leave so I can get back to let Mike get a meal in. If there is someone (or someones) who would be able to take Lochlan on Thursday mornings, that would be amazing.  Thank you to those that have offered your help and will be helping with our Thursday mornings! Playdates during afternoons are welcome and appreciated. 

Hosting a Fundraiser:

I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - cancertreatmentforkezia@gmail.com 

(For more insight into my decisions around alternative vs. conventional therapies, please stay tuned for a later blog post coming soon.)

Tuesday, March 8, 2016

I Wish I Could Live at Tong Ren!

Tuesday mornings. A morning that I get up, put my kid in the car, meet my mother at Panera Bread to give her said kid, and drive up the highway to my Tong Ren treatment. I get there before anyone else, take over the couch, pick out a blanket, put on my equipment, and lay down and drift off to sleep. It's the best nap you could ever ask for - Chi filled and deep. By the time I wake up the room is full, people are all banging dolls and chatting and laughing, and I'm there, drowsy and pain free (usually). Today I went the extra mile and got acupuncture before I left. Acupuncture days are the best. It's so calming, and it rids me of any residual pain, and leaves me feeling energized. Then I get in my car and on the drive home back comes the twinges and pain in some places. I hate the car and what it does to me right now. It ruins all the goodness that I just got. Oh how I wish I could just live there and never leave, then maybe I'd get better faster. Or at the very least, not have to deal with pain while I'm driving home. 

But, alas, I can not live there. But I can enjoy my time when I am there. 


Saturday, March 5, 2016

Pain Free Sleep!

Today has been a good day. I have had no pain today, which is great since more often than not I have some twinges or can't get comfortable. It has led to me sleeping most of the day, but that is much needed! 

My sleep is often interrupted by pain. It comes in waves and is sometimes constant, dull and uncomfortable, and other times sharp, powerful and unbearable. The latter is less frequent. For the most part I just can't find a comfortable position to sit or lay in, and standing is difficult most of the time.  

It makes me quite annoying - I really never have had to deal with chronic pain. I find myself loose patience faster, snap angrily more, and in general just be pissy. Traits that I do not normally have (although grief after loosing Saoirse put some of those on my plate, but not nearly as constantly). It makes it very hard with a toddler who is getting into the throwing tantrums over nothing stage. I loose my cool quite quickly, which doesn't help him or me, and he usually ends up needing rescuing while I go and try to slow my heart rate. Sleep deprivation doesn't help the situation either, and fighting a "strong willed" toddler to take a nap when all you want to do is go take one yourself seems like some sort of medieval torture. 

The days that I can get comfortable I try to take advantage of the uninterrupted sleep! Some may look at this as worrying, or lazy, but I look at it as progress! Especially when that uninterrupted sleep is free of night sweats! It means that my body is truly resting and not fighting itself from the inside out. A feeling that makes me know I'm doing the right thing. 

So today I got to sleep - and I'm feeling fully rested. Now to get up and see if I can do something like a normal person - play with my crazy toddler!


Thursday, March 3, 2016

When Cancer Interrupts Life

*Updates highlighted in yellow*

For the past two years I have been battling my relapsed Hodgkin's Lymphoma. I chose to do alternative therapies instead of conventional, toxic, chemotherapies. I had done my research on so many different treatments, conventional and alternative, and I knew toxic was not the choice for me.

Almost exactly two years ago I found the therapy that has been my only treatment so far - Tong Ren. Based in Traditional Chinese Medicine, mixed with modern technology and understanding of the metabolic nature of cancer and it's bioelectricity, its truly kept me going for the past two years. I have felt great, been able to live my normal life, and it seemed to be shrinking my lymph nodes - slowly, but surely (at least the ones I could feel on the outside).

I was feeling great, and with the exception of what I thought was a back injury in the late fall/early winter, I was able to keep up with normal life no problem. With the amount of travel we do for CareAline, it fit in perfectly as I was able to log into group energy sessions online, and bring my sound wave therapy machine with me when I traveled.

At the end of January this year, I went in to have a CT scan as it had been a year since my last. I was looking forward to great news - that the rest of my body was showing the same as the nodes I could feel from the outside. While I did get partially good news (yes, I wasn't crazy, many of my lymph nodes were smaller and showed improvement), there was also some pretty bad news on my scan. There were many nodes that had grown, and unfortunately the ones that had, were the ones starting to cause me problems (that nagging back injury? not an injury - a node behind my kidney and one on my iliopsoas muscle), including a softball size node displacing my liver. I was devastated.

Putting my health first has never really been a priority. I was doing ok, and nothing was interrupting my daily life, so I kind of just did what I had to to get by. I had other priorities - like a business and a toddler. Now I was faced with a decision - give up, or put my health first. At first, I just wanted to give up. It seemed like the much easier option, but its not a very attractive one. So, I decided I have to do something. I did a bunch more research on options from conventional to alternative, and conventional just doesn't seem to be offering me much in the way of true life extension. So I'm delving deeper into more complete and intensive "alternative" therapies.

I have been lucky up until now - the Tong Ren practitioners I have been going to have been graciously treating me for free for over a year now. But the new centers will not be so forgiving. It will cost upwards of $60,000 for me to do an inpatient treatment if that is what is recommended to me. The two centers I'm in contact with on the west coast have some amazing treatment options and have some amazing statistics of survival, but nothing will be covered by insurance - not to mention the travel costs to get there.

Waiting for responses and reviews of my medical records has been tedious - partially because I was so wishy washy about getting the forms filled out and sending the records (sometimes its hard to be an adult!). I have started a bank account and PayPal account specifically for fundraising for treatment. I'll post addresses and links below. There are also some things that would help me immensely at home until I get set up and raise enough money for the full treatment.

Immediate needs:

Local YMCA membership: $125 graciously the local Y has donated a 6 month membership for me.
     My body is giving me a hard time about moving around. My muscles are just not keeping up. Swimming would be great exercise for me to keep my lymph moving while supporting my body weight.

Far Infrared Mats: $750 I was able to use donations to date to purchase the mats. Thank You!
     Hyperthermia therapy is a great way to systemically kill cancer cells. I have done a TON of research on this - and it's one of the therapies included in the comprehensive treatments that are done at the centers on the west coast. I can start this at home with far infrared mats. (They have to heat up to above 60 degrees Celsius to be effective, which is why the cost is so high. I have talked directly to this company's distributor and received documentation about the testing that was done for these specific mats.) They will also help relieve some of the chronic pain that I have been experiencing. 

Medical Cannabis: $TBD (waiting on call back for pricing from dispensary as well as license processing)
    I have been dealing with a fair amount of discomfort, and some pain - especially at night. Pain medication has helped, but it decreases my appetite and keeps me from eating enough food to stay healthy. Massachusetts is a legal medical cannabis state, and I have found a local dispensary that can help me with both pain management and appetite stimulation, as well as anti cancer action using cannabis oil. I was also recommended (by the CannaKids organization) to a consultant who can help me pick the exact strains that will be most effective for me personally. (Half hour consult - $75/ Hour consult - $150.) Cannabis has a synergistic effect with the ketogenic diet. 

Ketogenic Diet: $200 / wk
    I have found a great cookbook and a couple support groups to help me with doing this diet as a treatment for cancer (se below for more info on my choice on this). Groceries for the recipes have added quite a bit to our grocery bill. Help with that cost is greatly appreciated as well. 

Massage: Gift Certificates
   Massage is something that I definitely need. My stress level is quite high, and although I have been working to find ways to de-stress, massage would be great. I currently have three gift certificates that I will be using with cancer certified massage therapists. 

Lymphatic Drainage Massage/Myofacial Release: $TBD
    I am looking into this currently. I have been recommended a local practitioner and will discuss with her about my condition and her recommendations. More soon on this.

TO DONATE:
PayPal:
Bank:
Cancer Treatment for Kezia
℅ Peoples United Bank
1 Conant St.
Danvers, MA 01923

Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923

*The rest of the costs I will find out about within the next week or so. I will update this post as that info becomes available to me.* - I have heard from one center - I was not impressed with their intake, and concerned about the information. The second center has not yet responded with a consult date. 

Lots of people have asked for ways they can help us. Other than donating to help fund the treatment, and sharing this post so that others can offer their support, there are some things that would be helpful to us at home. Mike has been a saint in basically taking over running our entire life. He not only runs CareAline every day, he takes care of Lochlan, cleans the house, cooks our meals, does all the errands, and takes care of me. If I can take some of those things off his plate, I know it would help him out a lot. (I'm pretty much useless these days)

Prepared Meals:
I am on a very specific diet - the Ketogenic Diet. I have done a LOT of research on this too, and have decided to get my body into ketosis to help starve the cancer cells and make treatments more effective (this is a good idea for ANY cancer patient - alternative or conventional therapies). This diet is very time consuming as it basically eliminates all processed food and requires a lot of cooking. The cooking isn't difficult, it's just constant. If anyone is on this diet and wants to help me figure out a good flow of cooking, I'd LOVE the help. If anyone wants to make a few meals that we can have on hand to heat up, I can point you in the direction of some recipes (or you can google or pinterest for them). I try to avoid too much dairy, with the exception of good grass fed butter (kerrygold rocks!), and too much meat. 

Help with Lochlan:
Unfortunately, Lochlan is getting a lot of TV time here. I can do more sedentary activities with him on good days (stringing beads and play dough are some faves), but I can't really get out and run around with him. I just don't have the energy these days. Thursday mornings are our highest need time. I go to treatment in Haverhill - I leave the house at 7:30 and don't get back sometimes until 11 or later. I always feel like I'm in a rush to leave so I can get back to let Mike get a meal in. If there is someone (or someones) who would be able to take Lochlan on Thursday mornings, that would be amazing.  Thank you to those that have offered your help and will be helping with our Thursday mornings! Playdates during afternoons are welcome and appreciated. 

Hosting a Fundraiser:
I have heard a few people mention that they would be interested in hosting a fundraiser. If you are interested, please email me and let me know - cancertreatmentforkezia@gmail.com 

I'm not going to give up. And if things keep going quickly, I have temporary conventional treatments I can do here to "tide me over," even though I'd rather not. My goal is long term remission and no subsequent toxicity induced cancers. I don't think that's too unreasonable. (For more on my research/decisions about conventional and alternative treatments, please see later blog post to be posted soon.)

Thank you so much to everyone who has already supported us through this journey. I often times feel like we are alone, but when we truly reach out, we find so much support.

Monday, February 29, 2016

Fundraising for a CURE!

This is a short post, as my mind is just not settled enough to write. I have been faced with both good and bad news. The good - about half of the nodes in my body were smaller on my last scan ( something is working somewhere!), but the other half are quite a bit larger and, unfortunately, causing me some problems. I have inquired at two institutions on the west coast, with one more to call. I will be raising funds to cover the cost of treatments, which could rise up to or exceed $60,000. I have set up a bank account specifically for raising funds for treatment. Any support that you can give is amazing. We appreciate all the support we have received already, and hope that this is the last time that we will have to ask for help to get through this monster called cancer.


PayPal:


Bank Address:
Cancer Treatment For Kezia
℅ People's United Bank
1 Conant St.
Danvers, MA 01923


Mailing Address:
Kezia Fitzgerald
PO Box 61
Danvers, MA 01923


I will get back to writing more soon. I need to try and settle some things, but I think writing will be an outlet that will keep me sane through this. There have been some very down times for me lately, and I think that I need to share both the struggles and the successes to be able to completely tell my story.

Thank you for your support.
~Kezia

Wednesday, September 2, 2015

First day of school...

Life has gotten quite busy. Traveling, working, raising a 2 year old, summer, weddings and general life. But sometimes life sneaks up on you when you least expect it. 

Today, most of the kids in the area started school. That means, All of Saoirse's friends started kindergarten. While this is heartbreaking in so many ways to me, I find myself wondering more about what it would have been like to have her here. 

What would she look like?
Would she be going to school with her friends or would we have home schooled her?
Would she have needed to have hearing aids to hear the teacher?
Would she make friends?
Would she have picked out a Frozen backpack?


There are so many questions. Questions that will never have answers. Questions that will never need answers. 

I hope that just maybe, some of the friends that knew her as a baby will remember her as they all make new friends at school.