CLL Dork Goes Raw

Bummer - Weekend Washout

2009-09-11T21:50:00.009-04:00

The backpacking trip on Fire Island has been cancelled. All my gear was ready - dusted off and aired out since my last backpacking trip a year ago in Oregon. The good news is that I've been exchanging emails with the organizer and she will be planning other backpacking adventures!!! I'm excited!

I found a website that sells freeze dried vegetarian meals for backpacking - http://www.packlitefoods.com/ - My order should arrive any day now! YAY! I got a Katadyn water purifier and a Jetboil too. I'm ready! Got some Under Armour base layers for the cool weather. For some reason I call it Armour All - the stuff you clean the car with! LOL

This Sunday there is a fundraising ride for the Guide Dog Foundation. Do I dare attempt the 50-mile ride? Hmmmmmm......

October 3rd is the date of my next hike which will be in the Catskills. This will be my first hike in almost a year. I'm very excited!

CLL Clinical Trial - Hydrochloroquinine. Basically, this is medication for Malaria. I've been asked to participate in a Clinical Trial by Dr. Rai and his staff. For some reason, this medication reduces the WBC (white blood cell count). A normal person has a WBC of around 3,000. Mine is currently at 46,000. I've been taking the meds for almost two months now. I go every four weeks to give blood samples. Four weeks earlier, my counts were 58,000. So, my WBC has gone down by 12,000 injust four weeks. This can be just normal fluctuation. I'd like to think the meds are working. My platelets and Hgb dropped a little, but still are in normal range.

A friend of mine at work was looking at my arm and horrified to see how bruised I am. Actually, I have quite a few bruises on my arms and legs. Some I can explain, some I have no idea how I got them. My friend insisted I call my CLL doctor. I did. My doctor wants me to come in to do some blood tests. I'm going to think it over and decide on Monday if I want to make an appointment and go in to LIJ. I'm feeling pretty good - just been a bit tired, but I've had a lot on my mind the last week or so and haven't been sleeping as soundly. TGIF I'm sleeping in tomorrow!

Trek Bike

2009-08-24T11:30:00.002-04:00

This is the bike I plan on buying. It is a Trek road bike 2.1. My current trusty steed is fast becoming a thing of the past as I progress as a cyclist. I need a lighter, faster bike. A mountain bike with slicks is no longer cutting it. I've changed the pedals on my bike to clip on pedals and bought bike shoes. What a blast! I could not believe how it increased my speed!!! The cycling club I belong to is awesome. Suffolk County Bike Riders Association. You can find them on www.sbraweb.org. The people I ride with are very nice and very supportive as I learn. The socializing after the rides has been a lot of fun too! The cycling club has opened a whole new world to me!

Cycling clothes can be expensive. I love these three sites www.primalwear.com, www.teamestrogen.com and www.terrybicycles.com. Very cool stuff!

I'm also gearing up to get back into hiking and try another backpacking trip. I'm currently on a wait list for a Fall backpacking trip I really want to go on - stay tuned!

Friends Come and Go

2009-08-23T21:11:00.002-04:00

In my case I have one friend who comes and goes and comes and goes and comes and goes. Well, the friend is gone again. Blogs about it too. She's a friend who I have had a lot of fun with at times. I even thought of her like a sister. I guess we fight like sisters too.

Now at one of the most difficult times in my life, she has decided that we are not friends again. Not sure what I did. It's okay. She has lots of good friends now and a wonderful social life. She's happy and in a good space - that's what is important. She's involved in a sport that I could never do. I don't have the endurance or the stamina - besides, my spine would probably fall out! Of course, smoking doesn't help, but that's the stress in my life at work. So, my former friend is in a better space without me. I guess the difficulties in my life are too much for some people. I never want to be a burden to anyone. I never want to cause someone else pain or hurt. Anger and resentment is a poison that slowly takes over every fiber of our being - it influences our thoughts and actions. I've been working hard at not letting these poisoned emotions into my life. Bitterness too, can make one ugly.

I guess what it all boils down to is that I must be a pretty pathetic person. I have an incurable cancer that will eventually rob me of my life. The stress of not knowing when and if the disease will strike full force is maddening. I've tried for many years to help my husband beat his drug addiction. It has finally come to the point where I had to leave him. Now I find myself living as a single parent raising my soon to be teenage son alone. My brother has been kind enough to take us in. Now I face possibly losing my house. The hardest part of leaving my husband was leaving behind my father-in-law. He's always called me "the glue that holds the family together". Unfortunately, I have had to put my son and my health ahead of everything else and at all cost. My counts have been rising faster than they ever have before. I'm concerned but not frightened. I still feel pretty good. Some days I'm very tired and need to take long naps. Something I've never done before. I'm happy and not living with as much stress. I have my new hobby of cycling, which is pretty amazing. A sport I can do!!! I'm athletically impaired, but cycling is something I can actually do!

So, yes, I'm pathetic. But ya know what? I'm happy and content. My son is happy and well-adjusted. Material things can come and go. Friends can come and go, but I'm satisfied with my life and the direction I'm now moving in. I'm blessed with the most incredible support and encouragement. When I put my head on my pillow, I can sleep peacefully.

I don't know what my future holds, but I know who holds my future! It is only in Him I find true peace.

Being Blocked on Facebook

2009-08-20T11:25:00.001-04:00

Goodness! I have been blocked! Rec'd this email today:

i don't know if you've seen but i decided at this time to take you off my facebook as well as me taking me off of your facebook. if you would like an explantation I can provide you with one, but I feel its for the best. It is not as though I have anything to hide, because I never ever write anything personal or private on my facebook. When i see what you write, and I don't click onto your page, I just see it on my homepage, I scratch my head in disbelief. Wondering why you would write for the whole world to see all your personal business. It is odd to me. I just don't want to be reading about all that so I removed you.
I have really done a lot of thinking and I think it is for the best if we cease contact with each other. While I appreciate you asking about my running the half marathon, we really have nothing to say to one another. You have a lot on your plate and I really have no place in your world nor do you in mine. We are just too different and I can't see us having any sort of friendship now or probably ever.
I don't mean to be harsh. I also don't get why the forum people still come and read my blog. That is another thing that baffles me. I left there and people are still interested in what I have to say. With the way I curse on my blog you would think the forum peeps wouldn't want any part of that.
Anyway, I wish you all the best Karen. Stay healthy, eat healthy, continue biking or whatever you do for exercise. That guy Adam seems to be leading you in the right direction, I guess. Except, you should be able to eat whatever the heck you want to eat.
I am actually doing really great and I am in a good place now.

I'm not upset about this at all. People I have shared this with find it amusing.

It Has Been A While ... A Lot Has Happened...

2009-08-02T19:21:00.002-04:00

So, I have not blogged since March. I don't anyone missed me either! LOL

Much has changed in my life. In May, I left my crack addicted husband. I packed up my son and sent him for a week to family in Colorado while I packed myself up and moved. My brother has been kind enough to let my son and I live in his house. It's the house I grew up in that my great grandfather built. So, it's kinda cool for Tyler to hear stories about the family and growing up.

Due to financial difficulties, I have not been able to stick to a raw diet. It has been difficult and I know I feel 100% better when I'm raw. My goal is to start juicing again and making green smoothies. I am enjoying summer fruits! I will blog about my progress.

So, living in my brother's house. My brother is currently living in Monroe, LA on a contract job assignment. However, I do not have the house to myself. I have a housemate. A Geek in the Attic. I will not use his real name but call him GitA. He's going thru a separation with his wife ): Seems like we get along very well. Actually, I could not ask for a better housemate. We work well together. He's good with Tyler too. He's fixed the brakes on my car, got me into cycling, nagged me about finances (thank you, GitA). We have not experienced any pettiness of any sort either. Although, he makes fun of raw foods and we don't see eye-to-eye on what healthy eating consists of, we get along. If only you could see his idea of a meal!!!! It is very scary. His meals are prepared foods, frozen and microwaved......ewwwwww! LOL

I've joined a cycling club. I rode 22 miles yesterday and took a 4-hour nap. Could it be that I'm seriously out of shape? Which I am! Or CLL fatigue? Hmmmmm.....I'll just ignore it and keep on cycling! Love riding my bike!!!! I hope to save up for a real road bike for next year! How cool would that be???

So, I must give a lot of love and credit to my CLLC Forum Friends who have supported me and seen me thru some hard times with leaving my husband. I appreciate their bluntness and telling me like it is. I appreciate the women who have taken me on as a "daughter" needing motherly advice. All of you are way to young to be my Mom! I love each one of you dearly! Without you, I would not have made it this far.

I appreciate the Facebook friends who have reached out to me too. The encouragement is priceless.

Let's Try Again

2009-03-14T18:42:00.002-04:00

Well, it has been a while since I posted. I try to go 100% raw, fail and try again.....

Due to stress in my life, I binge eat. I need to work on getting that under control. I bought lots of nice fruits and veggies today and plan on juicing tonight.

Work has been stressful. Layoffs....bad attitudes.... I like my work. I'm thankful for the friends I have at work too!

My stress is my husband and his constant battles with drug addiction. It has gotten to the point where I may have to move out of my house to get the message across to him that he is going to lose everything if he doesn't get his life under control. My leukemia doctor is amazed that I'm not much sicker than I am. I've only had minor health issues. Right now I'm on a daily low-dose antiviral for chronic mouth sores. Doesn't seem to be working.......

God is my strength. People who know me personally cannot understand how I tolerate the situation with my husband. Even that I'm still sane, which is debatable at times!

I find the internet to be a source of help for me. I have my CLL Forum with fellow leukemia warriors. I've learned about raw foods. I've also learned that the internet can be a scary place and one must be careful who they let enter into their personal life. I've had one bad experience that did not end well. However, I have had many, many more good experiences and have met many wonderful people. I've received a lot of support and encouragement during rough patches in my life - which seem all too frequent lately.

Right now a CLL friend, Stacie, is battling for her life. Please keep her in your prayers.

Please pray for my husband too that he finds the strenght to stay clean.....

Raw Ice Cream and Stuffed Shitake Mushroom

2009-01-25T20:48:00.002-05:00

Tonight I made raw vanilla ice cream from the recipe in Darma's book. I've had the ice cream at Pure and it is AWESOME. Right now my first batch is chilling in the fridge. Tomorrow I'll put it in my ice cream maker. The hardest part was getting the meat out of the young coconuts. The recipe itself is quite simple - soaked cashews, vanilla extract, vanilla bean seeds, sea salt, purified water and coconut butter. I tasted the unfrozen mixture - it was goooood!

I also made a stuffed shitake mushroom. There is a great little restaurant in Islip - Generation Organics. It's not a raw retaurant, but has a few raw items on the menu. One of my favorite items on the menu is their stuffed shitake mushroom. I marinated the cap of a shitake mushroom in balsamic vinegar. Next I put in the food processor sunflower seeds, cashews, red pepper, tomato, parsley and part of another marinted shitake mushroom. I'm sure I'm missing a few ingredients that Generation Organics uses, but the stuffing tasted pretty good. It will be my lunch tomorrow.

A really great dessert I had recently was made by Arianna who just opened a cafe at Blue Firmament in Rockville Center. Right now the cafe is only open on Saturdays from 11 am to 5 pm. Arianna makes a caramel chocolate pie that is AMAZING. Her speciality is desserts. Arianna is a certified raw chef. She's a wonderful person. I recomment checking out her cafe. She's got lots of good stuff. For her opening, she also made chocolate covered frozen raspberries! WOW Oh, and I cannot forget to mention her banana cream creation. AND her ice cream cake. She makes incredible raw pizza too! Can't say enough good things about her raw creations!

I'm still looking into kombucha. I found a cool websit that has 7-day course on making kombucha that is free. The website is www.getkombucha.com.

Working on Going 100% Raw

2009-01-19T13:58:00.002-05:00

Going 100% raw has not been easy for me. I've gotten a lot of support and help from www.rawvolution.com. Their food is awesome!

I've had some setbacks. The holidays were tough and I gave in to all the nasty treats. I'm getting back on track - AGAIN!

I'm looking into Kombucha. I'm thinking about making my own. Any ideas?

Day No. 2

2008-08-21T20:58:00.004-04:00

Today is the second day of being almost 100% raw. Breakfast I had a nice juicy peach and later a plum. For lunch I had a wonderful leafy green salad. Tonight I made a nice green juice.

After looking a pictures of myself from the raw vegan hike, I realize I need to do something about my shape. .....round is a shape, isn't it? Well, I'd like to go back on the hike next year and be a before and after! Can I do it? I'll certainly try!

Tomorrow I'll start a new batch of wheatgrass! Maybe sprouts too! Maybe I'll try to make raw ice cream again..... This time I'll remember to put the bowl in the freezer!!!!

I joined some local meetups for hiking today. I'm excited about it. One group does a lot of day hikes on Eastern Long Island. Sounds like a great start for me! There's one this weekend that I'm thinking about doing..........

If I don't go on the hike Saturday, I think I'll get up early and check out the farmer's market in Islip. I've been told to get there early. The raw organic produce sells out fast!

Weekend at the Beach

2008-08-17T21:42:00.002-04:00

Well, spent the weekend on the boat at the beach. I tried hard to stay with the raw foods. I had lots of friuts. My husband was waiting to see if I would breakdown and eat meat. The only time I would eat a lot of meat was at the beach BBQing. Well, I got myself veggie burgers!!!! So, I wasn't totally raw, but I had fresh, not frozen, veggie burgers. I also had fruits that I've been dehydrating.

The next time we camp out on the boat, I'll plan better for myself!

Raw Vegan Hike

2008-08-13T12:07:00.002-04:00

It's been a while since I posted. I must confess that I did fall off the raw cart for a while, but now I'm back and newly inspired. I came back a week ago from a raw vegan hike - pictures to follow. I backpacked in Oregon for four days with other raw vegans. It was very physically challenging for me. We hiked 30 miles and 3,000 ft vertical. The weather was perfect. Warm during the day and chilly at night. We swam in pristine mountain lakes from by the melting snow! Yes, there was still snow in August! If you want to check out the hike, see www.harmonyhikes.com. Sergei is an awesome young man! His sister, Valya, also went on the hike. I also had the privilege to meet his mother, Victoria. They are wonderful, vibrant people.

I learned new raw recipes from Sergei. I met wonderful people too. My fellow hikers were awesome. Ashland, OR is a cool little town. I got to meet serious hikers doing the Pacific Crest Trail at the hostel I stayed at before and after the hike. I never heard of the PCT before. It is a hike from Mexico to Canada. It can take 5 to 6 months to complete. These hikers have trail names. Three that are memorable are Laces, Good Times and Brit. I enjoyed chatting with them. I know they are still on the trail and wish them much success.

Watch for pictures!

Trusting God

2008-03-24T10:02:00.002-04:00

Seems like my family is going thru a lot of trials lately. It can be very discouraging at times, but I have to remember that God has it all under control. At the end of this week, the 30-day notice is up for the guys in my FIL's house. Next we get a court date if they are not out. I know the lesson I've had to learn in this situation is to love my enemies and control my temper. I hear myself saying quite often ".....yeah, but, you don't mess with family!!!!" That's my justification for my temper. I need to sit back and be quiet and think to myself, "....yeah, but, you don't mess with God!!!!" Showing mercy to those that hurt us is hard, but it is not me they ulitmately have to answer to. God has shown me a lot of mercy. Now I need to practice it. Not that I'm to be a door mat, but these two guys living in my FIL's house are just lost souls with drug and alcohol issues. They think they are getting one over on us. I feel sorry for them. They are too young to be throwing their lives away like this.

Next is my financial situation. It's ugly and that's all I'm going to say about that. I know that God is my supplier.

And on a lighter note.......I'm down 32 lbs. I've been a bit naughty. Darn those chocolate cadbury mini eggs! Today I'm back on track. Three more pounds and I'll be at my halfway mark. Pretty amazing!

Where is the Weight Going?

2008-03-06T13:34:00.002-05:00

I weighed myself again today. I'm down 26 lbs! I am NOT hungry. I don't binge and I don't have cravings. It is truly amazing. I have never been able to lose weight on my own. I did Jenny Craig over the years twice with great success, but I would slowly put the weight back on.

This morning I was really stressing about the dead beats in my FIL's house. I've calmed down - thanks to Sally aka Justme! Words of wisdom from the Word of God. There is power in the Word! I would have not made it this far in life without knowing Jesus! I have peace.

Know what a diamond is? A lump of coal that has done good under pressure! I want to be a diamond!

Just another day in the life....

2008-03-04T19:01:00.002-05:00

Well, the lawyer sent out the 30 day notice letter to the dead beats living in my father-in-law's house. I've been stressing ab out this mess. All the neighbors around the house are watching it and will report anything unusual. I'd really like to hear that a they saw the dead beats moving out! The neighbors really love my FIL and gladly look out for us.

I worry a lot about my husband and hope this doesn't put him over the edge. He has a lot of stress on his job. He is project managing the electric on a very big house out east. A very famous person too! Can't mention names.

Well, I'm down 23 lbs since the beginning of the year. This raw diet really agrees with me! I haven't gotten bored with what I'm eating. In fact, I'm enjoying raw foods and the different flavors! It is very satisfying! Next week I'm having dinner at Pure! Can't wait! I'm going to a real raw restaurant and meeting real raw people!

Friends and others.....

2008-02-28T09:31:00.002-05:00

I've exchanged emails with a new cyberfriend who has a lot in common with me, CLLer, raw, young child! It's nice to find someone to share with and at the same time sad to find someone else facing the same circumstances of the disease. She encouranged me to read CrazySexyCancer. I've known of the blog, but have been afraid to read for fear of facing my own mortality. Denial. Something we all face with an incurable disease. But each day we have is a day to live to the fullest.

Now for "others"....... currently we have two dead beats living in my father-in-law's house. Two young men who were down and out. We let them stay at the house with the understanding that it was TEMPORARY. They were to pay a low rent so they could get on their feet. They have not paid us and are refusing to leave. In fact, they threatened us. We had to file a police report. Of course, there is nothing the police will do. I see a lawyer today to start the eviction process.....

Yesterday I got a few deliveries of raw foods I ordered. I ordered organic friuts - the bananas were a bit squished and bruised and one mango was not in perfect condition. The other fruits were pretty good. Not sure I'll order again, but it was an interesting experience. I got a wonderful order of dried fruits from another site - medjool dates - my favorite - like eating candy! I received mulberries from another site! I think I like them! Next I got very special raw chocolate bars! They are not the type that you sit down and eat all at once. Too rich, they are something to be savored. They are a very nice treat! I have one more order due today! Nori sheets! LOVE SEAWEED! Contact me if you are interested in the sites I order from. Eventually, I will post the links.

In the beginning.........

2008-02-27T13:59:00.000-05:00

Wow, my first blog. Wonder if anyone will read it. Michelle, you out there?

Well, here goes. I was diagnosed with CLL - chronic lymphocytic leukemia two years ago at the age of 43. Two years of searching and trying to find the best way to stay healthy - I've discovered the raw diet. I've decided to transition to raw on 1/1/08. It's a little tough because I live with a family of carnivores. If I don't cook, they don't eat. I've been juicing. It's been a fun experiment. I've learned to make nut milks. I can make spaghetti out of zucchini and a pretty nice raw sause too!