Two Years Since Cancer Diagnosis

Time for a serious post (don’t worry I’m doing some unboxing’s and unbagging in the next few days for everyone). For those that don’t know I was diagnosed with Acute Promyelocytic Leukemia on June 2nd 2013. I am doing well now on February 22nd of 2015 I hit my official one-year in remission mark. I am very lucky that my type of leukemia and the fact that I was considered low-risk (lots of factors here) I was able to do a combination of Arsenic Trioxide and ATRA chemotherapy route. Yes, that’s the regular old arsenic they use to kill rats. From June until the end of Feb I had chemotherapy 5 days a week with a 14-day break every month and a half. 

Bone Marrow Biopsy for Diagnosis. YAY

I also had a reaction to the ATRA – fluid buildup, fevers, and caused me to go legally blind (I can see now but I’ve had to have monthly injections of medication – more chemo – into my eyes). 

Fun shit they don’t tell you about cancer:

• My treatment made me lose a layer of skin. Literally just peeled off like sunburnt skin. You should warn people of this shit before it happens. 
• You can taste the chemo and it will ooze out of your bodily orifices. The skin around my eyes would burn, as if I had been out all day and gotten sweat into my eye, but it was chemo. 
• I expected to not be able to taste food but I didn’t realize food would become an enemy. Meat tasted and smelled like dog food but I needed my protein. The balance was a huge struggle.
• My body stopped making fingernails. I had divots in my fingernails where my body stopped making fingernails. 
• My hair turned grey and then back to brown. I think this is related to the fingernail thing. 
• You can’t kiss or have sex for 24 hours after chemo (my chemo at least). They told me this factoid month’s into my treatment. So, I poisoned the hell out of my then boyfriend – laugh. 
• You have to stay away from you pets. Depending on how compromised your immune system is you may have to get rid of your animals, at least for a while. 
• You will never EVER experience constipation like when you’re on chemo. Ever. 
• Your recover will take much longer then you think. I had the idea that after chemo ended it would take awhile for it to leave my system but my guess was a month or two and I was wrong. It has been over a year and I am still in physical therapy dealing with the after effects of muscle denegation and weakness. 

Cancer is also very surreal for me. I still don’t grasp that I had cancer or that I’m in remission. We don’t remember everything, our memories suck, and we can get cranky, moody, and angry without knowing it. Just ask my poor mother. 

Zombie Eye after an injection

I am lucky that I haven’t had to have a bone marrow transplant (it could still happen). If you want to help (and everyone should) please go to http://bethematch.org/ to find out how to get yourself typed for bone marrow donation. Please give the potential gift of life to someone who needs a bone marrow transplant.

Update on MS, Cancer, and Venting.

This blog is an update on my MS, Cancer, and people who annoy me.

First the MS. My MS has been doing pretty good overall! I really expected to have a flare after all the stress on my body after the cancer, chemo, and everything else that goes along with the cancer. However, no flare and I don’t think there will be one anytime soon. I’m pretty happy that my MS seems to be going along well. I am really fatigued lately and that could be the MS or it could be from the loss of stamina from the cancer (seriously all my muscles went away, it’s crazy). Either way, it’s slowly getting better and I’m very happy about that!

I am still taking Copaxone (40mg 3x a week) and it’s still working well for me. During my chemo they let me continue to use my Copaxone and this makes me even more confident in my decision to use Copaxone. As a side note, I am not telling you to take Copaxone and I’m not making any claims that this will be the best choice for you. It works for me and it’s my best choice – smile.

My last chemotherapy infusion was February 7 2014 and I’ve been in official remission since February 21 2014. I have been seeing my Oncologist every three months give-or-take for genetic testing to make sure I’m still in remission. I just had my 9 month appointment and STILL NO CANCER! Yay! Merry Christmas to me!

I still have after effects such as my eyes (I still have monthly injections) and my stamina but my problems are improving. I am happy to be where I am though in my recovery.

Now a little vent – I’m so tired of people complaining about everything. I mean everything. Yes life sucks sometimes and bad things happen. I’m not saying you can’t be sad or angry about things in your life. What I am saying is that being down, upset, and angry is no way to live. Life isn’t perfect but it is amazing and beautiful too. You’re missing out on all the great things out there if you live your life by focusing on the bad.

 Stop the moaning and complaining and start living.

Just Keep Swimming

Today (tomorrow really because I'm writing this on the 9th) I will have my 31st eye injection. I feel like this is some kind of milestone for me. I don't know why it seems that way to be honest. I do know that I would like them to stop - laugh. They do work very well and are worth the twice monthly pain (two eyes). I mean it's that or be blind. So it was pretty easy to make the choice to have needles jabbed in my eyes (seems pretty anti-vision to me actually).

Why am I posting this? Well, I'm glad you asked! I wanted to let everyone know that even though I have Multiple Sclerosis, I've battled cancer, and I have needles jabbed into my eyes monthly - I still love my life. I love every stinking minute of it. I've made great friends (have great friends) have great family and continue to enjoy my life. 

Am I the same as a year and a half ago? Not by a long shot, but changing is part of life. Change is exciting and scary all at the same time. 

I want to say that things get tough; things can suck so badly that you don't know if you can handle it. I get it. I've lived it, but I'm here to say that you can handle it. You can laugh. You can have fun. You can just keep swimming - smile.  

What I Found out About Vitamin D Deficiency MS and Rosacea

I've been doing a lot of research on rosacea lately because I've recently had a really bad flare up. I have to admit that I've been really lax taking care of my rosacea (well...my dry skin, my makeup, my hair...pretty much everything) since my cancer diagnosis. Now that I'm a few months removed from chemo (and am in remission yay) I've slowly started to get back into the swing of things and by things I mean life. For me the chemo stopped me in my tracks. It almost feels like more then a year of my life was lost in daily chemo and cancer. 

It's so nice to be able to get back out there and live a little. The fact that my rosacea reared its ugly head is annoying but also a comforting normal part of life. Not sure if anyone understand that but I'm sharing (laugh). 

As I said, because of my lovely red face, I've been doing a lot of research on natural ways/any way/reason/did I eat to many hot peppers to help or explain my lovely face. For those of you who suffer from MS you may know that many people with MS suffer from a vitamin D deficiency. I am one of those people. I have not read anything that explains to correlation between MS and a vitamin D deficiency but there seems to be something there.

As I read more about rosacea, I came across many references to a vitamin D deficiency in people who have rosacea. WHAT? The hell you say! Well, yes it's true. I find it very interesting that, like MS, they don't know the exact cause of rosacea (same as MS), it's liked to a vitamin D deficiency (like MS), that it's inflammation (like MS), flares up and goes into remission (like MS), and is progressive (like MS). I'm not big on coincidences especially when it comes to health. 

Could the mechanisms of inflammation and then remission be related to a vitamin D deficiency? Could finding the mechanism for action for one help the other? Do the treatments for one (say MS) help the other (rosacea)? 

Things that make you go hm...

A Return to Clean Eating

I recently started eating clean again after a long headlong swan dive into eating garbage. This started when I was hospitalized a year and a half ago. My white blood cell count (my immune system) was so low I couldn't eat anything fresh. I couldn't even have fresh flowers in my room. The technical name for this is neutropenic. 

As we all know, hospital food isn't great to begin with. Now that my diet was even more limited by my eating restrictions it was horrendous. I believe I ate eggs for a month straight - horrible, nasty, rubbery, hospital eggs. After I was released I still had months of chemo. This lovely chemo did a few things, killed my cancer (yay) and made meat taste like dog food, Alpo dog food to be exact. How do I know this? Hey, I was a kid and grew up with two German Shepherds, you figure it out (smile). I ate what I could. I craved cucumbers and tomatoes, man I could have eaten a whole field of them, but surprisingly enough, you can't live off of cucumbers and tomatoes. So, I ate a lot of crap. Anything I could stomach really. 

Once my chemo was finished and I was declared in remission (Feb 21 baby!), my ability to taste food slowly started to come back. Now when I say slowly, I mean at a painfully frustrating pace that would test Korean baby Jesus himself. I decided in September that I could try to eat clean again. It wasn't until September that I could stomach meat without thinking of Alpo (laugh).  

I was following the paleo diet before my cancer diagnosis and I'm back to that. I have to tell you I feel so much better. Not only do I just feel better with the clean diet but my blood sugar, which went insane with the chemo, has corrected itself. Needless to say I will eat as clean as I can from now on. 

I've been a bad bad girl...

Wow! I have been gone for a very long time. My life has been pretty interesting since my last post and I'm going going to try (probably miserably) to condense it into a short blog post.

For those that don't know I had a long fight with Leukemia which started in June of 2013 (Acute Promyelocitic Leukemia to be specific). On Feb 21 2014 I was told I was in remission (yay clapping). I foolishly thought I was going to spring back right away and feel amazing. Bwhahahahaha.

I lost most if not all of my muscle tone, my stamina was done, and we won't talk about the needles being jabbed into my eyes monthly. My legs are literally the smallest they have ever been..in my life. It's taken me from Feb till October (right now) to get my stamina up to an acceptable level. Acceptable meaning I don't want to die if I go shopping. Actually, I can actually walk 2 miles now YAY.

It's really interesting to see your muscles growing back. It's actually pretty weird but amazing at the same time.

I'm single after four years. I've only talked about my boyfriend a handful of times on here. It ended abruptly but it's not a bad thing that it's over. Truth be told if I wouldn't have gotten cancer I think it would have been over a while ago.

I've been obsessed with makeup! No, seriously. I'm going to post some makeup blogs in the future. I might even do a little filming for youtube (we'll see). I'm about to do a crazy sephora run because

1. I haven't used makeup in over a year and a lot of it has dried out or gone missing 
2. I have rosacea, which is this lovely immune system reaction (hm and I have MS) that makes your face red (think sunburn) and break out  

So, I'm sorry all but you'll have to listen to me ramble about makeup from time to time. 

And the last topic I'll mention is my MS. My MS is doing really well. I've switched to the 40mg Copaxone injection, which is a three times a week injection. I was not going to switch at first but I decided to give it a try because the three times a week seemed to be a better option then a daily injection while I was dealing with my cancer. So far it's worked very well for me. 

That's my quick update and I'm back to blogging so keep an eye out (smile). 

Affordable healthcare: Why I luvs it (yes I said luvs)

I know that people have very strong feelings on the ACA (which BTW, Is its name it's not "Obamacare"). For me, and many people I know, it's the best thing since sliced bread. Why? Because we have Multiple Sclerosis (I also now have/had Cancer) and health insurers don't like us. 

This means before ACA if we lost our job or became unable to work (raising hand - that pesky cancer thing) and we did not have a spouse that had health insurance we were SOL. For those of you who do not know acronyms that means Shit Out of Luck. I want to address some questions people have asked me how ACA affects me and why I like it. 

Question 1

"What about Medicare? If you have MS you should get disability." 

This makes me laugh a 'lot'. It's very hard to get disability with MS. You have to jump through a lot of hoops to prove you cannot work and even if you have support for your disability by way of a Neurologist, Neuropsychologist, Physical Therapist, and an Occupational Therapist, they can (and will) still deny you (raising hand). To be fair, in my case my Cancer was mistaken for a worsening of MS but it was still denied. 

The other little bit of info that people don't understand is that you have a two year waiting period after you are approved for disability before you can qualify for Medicare. So, that is at least two years with no medical coverage. What about Medicaid you ask? You have to be destitute to qualify for Medicaid. Now, when I say you have to have NO MONEY I mean you have to have NO MONEY. I was hospitalized for Cancer, approved for emergency disability, and was getting 960 a month from SS and I ladies and gentlemen did not qualify for Medicaid. Let that sink in. 

I am lucky I was working until I got sick and had money put aside for COBRA. Without COBRA I would be dead right now. No blog, no talking about ACA just dead from cancer. 

Question 2

"Well, it's going to be too expensive. How are you going to pay for it?"

They have policies that range from 90 a month to 400 a month depending on what you need. If you're healthy, never see a doctor, and you're comfortable with a lower level of coverage go for the cheapest one. I however, have a chronic disease. 

Using my medication for an example - Without insurance it would cost me $4600/month to purchase Copaxone without insurance. That's just my MS medication. My cancer treatments were 12,000.00 each treatment I had 150 treatments at a bare minimum, not to mention my six week hospitalization and the oral chemo (which was 900/script x 6 prescriptions) that I had to buy. 

Would it be worth it to me to pay 400 dollars a month for insurance? You bet. 

Question 3

"I don't want to cover stuff I don't need like maternity care. I'm a guy, why should I pay for that?" 

I like how it's always the guys who say this. I never see a woman saying "I don't want to pay for Viagra and Prostate Cancer!" even though we do pay for it. That is how insurance works. We always pay for a base coverage that covers the basics of the plan such as maternity care and prostate cancer. This has always been the state of insurance. Why is it now an issue?

Question (really a statement) 4

Well you're different.

No I'm not. I personally know hundreds of people with MS who would be in the same situation as me if something happened to them, their spouse, or their financial situation. 

Question (or another statement) 5

No one will take that! My doctor doesn't take ACA. 

Well ACA isn't insurance but Blue Cross Blue Shield is, and that's what I have. Some individuals seem to be under the misconception that ACA is its own separate health insurance. That is simply not true. Do a search on the plan you choose (BCBS, Humana Aetna) to make sure your doctor/medication is covered before you buy it. It's pretty simple and is what I did. 

I hope this little blog helped someone out there understand ACA a little better. 

Copaxone: My MS medicine and Cancer

I'm a huge supporter of taking medications to help slow down the progression of MS. I also follow the guideline set forth by the National MS Society which to paraphrase is, to find an MS medication that works for you and stay on it. My MS medication of choice is Copaxone. I'm not posting this to say EVERYONE GO ON COPAXONE RIGHT NOW; I just want to share what I take with everyone. 

I've been taking Copaxone since my diagnosis in September of 2009 and I have never thought about switching. At the time of my diagnosis the only medications available were injectable medications, now they do have pills, but that wasn't part of my decision making process at the time. 

I had to choose between five different medications:

Avonex - 1 time a week injection

Beteseron - Every Other Day injection

Rebif - Three times a week injection

Copaxone - Daily injection (Yes, I give myself an injection every day) 

Tysabri - Once a Month IV

Tysabri was nixed by my doctor from the start. The way the drug works is to lower you immune system and by default has a lot of side effects of it's one. One of the most serious is PML which is a brain infection. He said that I should try the injections first and if that they didn't work then we'd revisit Tysabri. Works for me! 

Avonex, Beteseron, and Rebif are Interferon's and while the injections were less than Copaxone they all have side effects that can include flu like symptoms. As well, I would have to get my liver checked every three months. Avonex also has a REALLY BIG NEEDLE. All of the other injections are subq, which is an injection that does not have to go into the muscle. Avonex is IM which means it's into the muscle and A HUGE NEEDLE. 

Did I mention HUGE? 

The blood tests and the flu like symptoms were not on my list of things I wanted to do. That left Copaxone. Copaxone is an amino acid, a subq injection with no blood tests, and no flu like symptoms. Now, injecting myself every day was also something I didn't want to do, but I also felt that I had to do something for my MS. 

I've had some side effects, mostly injection site stuff like itching and stinging. The stinging is like a bad bee sting and it goes away pretty fast. It is a little painful but nothing I can't deal with. Once I've had the IPIR reaction. This is where you feel like you're having a crazy panic attack for about 10 minutes (heart attack panic attack same thing - smile). I knew what it was though so I didn't get too scared. 

When I was diagnosed with Cancer in June I was really worried about my taking my Copaxone shots. Call it focusing on something I had control over but I REALLY wanted my Copaxone. My oncologist's, hematologist's, and slew of other doctors had to research Copaxone and any interactions it may have with my chemo or with my immune system. However, within two days of being hospitalized I was able to begin my Copaxone again. 

I was told that if I had been on any of the other injectable medications for MS they would have discontinued my MS treatment. This to me was a huge plus on the side of Copaxone. I was going to be poisoned by chemotherapy but my Copaxone was safe enough to allow me to continue to take it. I was ecstatic. 

Even with all the stress of a cancer diagnosis, hospitalization, and 8 months of chemotherapy, I have not had a MS flare. Is that because of Copaxone? I can't say, but I can say that I'm sure it didn't hurt. 

Just as a side note: As of January this year (2014) Copaxone is being offered as a 3x a week injection. Woo hoo less shots!  

Things I Consider Physical Therapy or Justifying My Toys

I'm coming to the end of my cancer treatment and it's been a long road since being hospitalized in June. The muscles in my legs are gone (not missing just small) and my stamina is crap since I've been so inactive. I am now trying to do things about that like walking when I can.

I have decided that two things I currently want to play er I mean work on are my hand dexterity and fine motor skills. The big muscles like legs will slowly comeback with more cardio and eights, but the fine motor skills are different.

I have found a way to do this! I have a long road a head of me and after thinking about it I have decided that I will do this by using these proven methods.

LEGOS




I will also use Taylor Guitars!



Listen, if Romney's wife can use million dollar horses I can use Legos and lovely Taylor Guitars (I just got a Koa wood one LOVE IT). I'm also going use them as a tax write off! What?! 

How Would I Deal With Cancer?

I think that's a question people ask themselves when they see a celebrity on TV diagnosed with cancer. Maybe the thought crosses their mind when they hear of a friend or family member's diagnosis. I don't think I ever thought about how I would deal with cancer. I know I wasn't prepared when I heard that I had Leukemia. They told me in the hospital pretty non-nonchalantly that I had it as they were taking my blood for more tests.

I find that dealing with cancer is just what it is. Things change, a lot and not as much as you would think, you go to appointments you have chemo, and you just go on. What else is there to say? It sucks, it blows, there is good and bad, but it's just living. I don't know what will happen when my treatments are over. That isn't until February.  I wonder if it will be different after it's done? I guess only time will tell, and I've been told my feelings are normal that it doesn't hit people until all the treatments are done and things calm down a bit.

I'll tell you how I deal with cancer when I know. 

Things not to say to people with MS, people with cancer, or just people in general

Yes, it's me - alive and fighting my leukemia. I am legally blind at the moment because of low platelets (these cool things that make your blood clot) and retinal hemorrhaging (cause eyes don't like to bleed). So I haven't blogged in awhile. Things are a tiny bit better and I have the screen magnified and I felt like blogging.

I'll get more into the craziness of what's going on but for now here is my list.

1. "You don't look sick." Well you don't look stupid - yet here we are. No, you're right I'm lying about being sick and not working because it's fun
2. "Chemo doesn't work for cancer. The only thing that works is..." which is followed by ionized water or a vegan diet or something else their mothers sisters friend heard of once. Just stop and be quiet. 
3. "It must be nice to be able to sleep all day" Hows this. You get my cancer and then I get to work and not sleep all day. 
4. "I know just how you..." Just stop. No you don't know how I feel. Unless you have MS or Cancer or something similar you have no idea. Don't say it. 
5. I wont talk about anything else but your cancer every time I see you. Please, change the subject. We like talking about other things. 

Now I'm tired so I'm done with my list (smile). 

Jello Fights!

The purpose of this blog for me was to talk about MS. It's become a place I blog about about anything and everything. Maybe my blogs are not that cohesive but I must say I like writing them, and I will be writing many more in the near future.

My amazing friend Acharyia was recently diagnosed with Non-Hodgkin's Lymphoma and had her first chemotherapy treatment. This is her blog where she talks about it Achariya Writes. Her blog is amazing in general and you should read it.


However, we're talking about jello fights here. Achariya was trying to steal my MS ribbon color! Do you believe that? The MS ribbon is orange and has been for as long as time itself (this might be a lie I have no idea)! Even Abraham Lincoln knew that MS was represented by the orange ribbon and wore orange under his top hat to recognize the disease (this is an outright lie but makes me sound more credible).

The ribbon to the right here was found in the tomb of King-Tut with a hieroglyphic inscription that said "For people with the disease that attacks their Myelin" (yes I understand this is very specific however the Egyptians were working with UFOs and they had very advanced technology!).

The color of your ribbon is GREEN. Leave my orange ribbon alone!


Let's get the lime and orange jello and fight this out like real women! *

*all comments made were made in jest. I am being funny please do not read to much into this and send me angry emails about how I'm an insensitive weirdo. I don't really care if I hurt random peoples feelings but I have a horrible cold right now and I don't have the energy to read through all of your rambling emails of hate. **

**This was also said in jest. People need to laugh more. (BIG SMILEY FACE)