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!

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.

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

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. 

My name is Kezia...

My name is Kezia, and I have cancer.
I have a daughter named Saoirse, and she died of cancer.
I run a foundation for neuroblastoma, a pediatric cancer.
I own a business that makes products for patients with cancer.

My life revolves around the word that most people fear - cancer.

I'm so DONE with cancer.

Long Time Coming

It's been a long time since I've written. It's been a really hard winter for me. Emotionally I just wasn't ready for Christmas, and Lochlan getting to his second one and actually enjoying it. And I wasn't ready for Lochlan to pass the age that Saoirse was when she died.

So, a longer post is coming, but I wanted to post something and thank everyone for all of the support and congratulations on our win at Impact Pediatric Health at SXSW. We are super excited for what this means for CareAline, and we are looking forward to making our sleeves and wraps standard care at hospitals. If you are finding this page through a link from an article, click here to find out more info about CareAline and what we do.

I also want to thank everyone who supported our road trip down to Austin from Boston over on indiegogo! We are still raising funds for our future trips, so please share our campaign with your friends and family and keep checking in to see where we have gone! I will be updating it this week with images from this past trip, and some links to all the news articles that have been published since our amazing wins!

I am feeling well. Still doing my alternative therapies, and tweaking them slightly, and feeling really good. My testing is showing some progression, but I'm looking into some different options to try and turn things around more quickly. I feel really wonderful though, and don't feel sick, so I am going to continue to listen to my body and try and work on focusing on myself and my health for the next couple months at least. Thank you to everyone who has been sending healing thoughts and positive vibes. It has definitely helped!

quick update....

I haven't written in a while because we have just been too too busy. However, just a quick update (as I know some people think that things are bad when I don't write)...

Latest blood work came back improved! My white cell count had been hovering between 17 and 18 thousand (so super high! which is an effect the Hodgkin's has) and the last blood work showed it down to just above 15 thousand. Also, all the nodes in my neck - including the one that was the largest and the most annoying - have SHRUNK! My oncologist was thrilled when she did my exam, and made sure that I got my blood work results right away. I think every time I walk in there she is surprised and thrilled. I know she has her skepticism, but she definitely is glad that I'm doing well. 

So - status is no longer stable - status is IMPROVEMENT! LOVE THIS! 

I'll update more later - Tong Ren, Tui Na, Homeopathy, etc... all good things :)