Friday, March 25, 2016

Cytoxan Round Six - Health Update

I am officially halfway through chemo! Woohoo! Last Tuesday I had my sixth of twelve infusions. It felt so great to hit that milestone. It has been such a wild ride these last many months, but I know if I could make it through them, I can make it through the final six.

This last round was pretty rough. Almost immediately after my infusion I began having an allergic reaction to the Cytoxan. About 5 minutes into the drive home my lips began to burn and swell. As the day continued on the swelling and burning sensation only got worse as my lips turned a horrible shade of bright red. One of my eyes lids began to swell as well, but luckily, there was no systemic reaction. I am a bit worried my body is trying to tell me it wants nothing more to do with this drug -- which would be just my luck. lol  Allergic reactions can become more sever over time so I am a bit nervous for my next round. I will be talking to my prescribing doctor about this reaction when I see him in two weeks; hopefully he will have some ideas in how we can curb this new allergy.

The rest of the four days following the infusion continued on pretty much the same as always, constant nausea and misery. However, thanks to Cannabis I only puked once! That's right -- once the whole week! It really controls the level of nausea well if you can find the "just right" dosing.

That's it for now! Hugs!

Saturday, March 19, 2016

An Open Letter To Internet Commenters

While freelance writing for a variety of different online outlets has been a wonderful opportunity to share awareness with a large community, there is a dark side that most people fail to see. Just because an authors name is on a feature doesn't mean it is their original work. Many times outlets will alter original pieces to create shorter content, or to gear language more towards their audiences; this can often generate phrases or ideals the author never intended their feature to have. Unfortunately, as a writer this is something you must deal with, the possibility that your work could be highly altered, and your ideals could now be misconceived -- or perhaps even worse. Once one outlet alters your feature, another outlet may 'pick up' that feature and alter it themselves, creating a horrible game of "telephone" that leaves your original work in shambles. When you have a strong online presence, such as a personal blog, your name on popular news outlet features, or multiple social media platforms, your personal story can become the predator of online 'theft'. While the action of an online news outlet using your information from the web is not considered an actual act of theft, it can feel very intrusive and deceitful. Many times when your information, or story, is taken by such outlets, details and facts are extorted, exaggerated, and misconstrued. Occasionally, even quotes are taken out of context portraying opposite ideas from your original concept. 
I have been victim more than once of this form of virtual story theft. Most notably a story aired by The Daily Mail a few months ago. They poorly stitched together a feature loosely based off a few of my personal blog posts, and a recent feature from XOJane I had written -- that was actually slightly altered by that outlet as well. The feature threw wild facts, and down right untrue statements about myself, and my illness, while seriously altering my "ideals" from the original works. Unfortunately when you chose to be a public figure, your information posted online to a general audience is fair game to these outlets; while it is highly unfortunate and deceptive, there is nothing that can be done. 

Screenshot Via Facebook

Sometimes, even when a feature is created through a direct interview with a news source, facts and statements can be misrepresented. Recently I was interviewed by a very compassionate individual from The Guardian US on a feature regarding the US Health Care system and what happens to the ill young adults who upon turning 26, lose their parents health benefits. This piece was supposed to been an opportunity to shed light on a critically important topic, but unfortunately; the feature was a bit disorganized, in turn creating mass hysteria in a comment section full of filth and hate. While this feature should have been written with facts regarding young individuals inability to establish a solid work position resulting in useful benefits due to their illnesses, it instead focused on young adults who, to the reader, seemed to, "just want a ride from mom and dad." While I am sure this was not the authors intent, there were quite a few fragmented quotes, missing critical details about the patient's circumstances, and no reoccurring theme to wrap a solid conclusion from the piece. Unfortunately this lead to vast misinterpretation that millennials are: 

  1. Too lazy to establish their lives between the ages of 18-26 .
  2. Are entitled socialists that just don't want to pay for anything.
  3. Are total idiots. 

Comments on his featured ranged from: 
  • "Man I wish my parents has health coverage I could be on. Poor 26 year olds who had 8 F*****g years to establish, find a job, and live of mom and dad. How will they manage." 
  • "Get a job with your own benefits... Pretty simple." 
  • "Alexander the great conquered the world by 25. You think these people could get a job by 26.   A pampered worthless generation ..."  
  • "If your not employed by 26 you should be in jail, unemployed, or certifiably insane..." 
  • "We don't want to pay for your health issues." 
Need I continue?

What this featured failed to mention is that patients who are extremely ill didn't get ages 18-26 to establish their lives, attend college, and find a career that would provide benefits. We spent those years in hospital beds, surgery rooms, and receiving treatment. In my opinion, what this feature also should have included is the lack of disability inclusion in the work place. Even if a patient like myself was able to work, who would hire a woman on a feeding tube, requiring supplemental oxygen, that cant stand for more than ten minutes, or lift anything over 5 pounds. Also, don't forget this employer would have to approve 15+ days off a month for doctors appointments, and at least one full week in a row off a month for chemotherapy. 
Recently, a study conducted by Microsoft found that disabled individuals with masters degrees were employed only at 47% while able bodied adults with masters degrees were employed at 87%. The study also showed that many individuals hide their disabilities from employers to gain fair opportunity -- what about us that cant hide our disability? Do you honestly believe we would be hired?

So to the downright vile comments expressing those of us receiving health insurance from our parents until the age of 26 are lazy, entitled, dumb, or my personal favorite, "you're only in your 20's, life hasn't even begun to suck yet! Buck up a** holes." I have news for you. Being terminally ill and disabled was NOT a choice. Believe it or not I worked from the day I turned 16 to age 22 -- yep you read that right I worked while being terminally ill, simply because I loved working. As a teacher with an early education degree I had the opportunity to receive health benefits, but they WEREN'T GOOD ENOUGH, so my parents offered to extend theirs to me. Thank goodness I have parents that love and support me. At 22 I became so critically ill I laid unconscious in a Neurological Step-Down ICU for almost 30 days. My doctors finally told me I had to resign from teaching, and start relying on state disability, or I would die withing months.
In two years I will have the option to receive Medicare through my State Disability Program, HOWEVER; with the small income I receive from the state, and vast treatment, physician, and equipment needs it will not be financially possible to stay up to date with my health. Medicare is a treatment plan not made for seriously ill individuals. These plans just don't cover enough, meaning, patients typically have to purchase another supplemental state plan, as well as a prescription drug plan. Even with these extra purchased plans patients are still shoveling out money for treatments and prescriptions. Many seriously digress after turning 26 because they can no longer afford their prescriptions, copays, and treatments -- as all their income is now going towards the cost of Medicare, and their necessary supplemental plans. Patients have stated that nearly 70-80% of their state income goes back to the state for these necessary plans, leaving just 20% of their income left to pay their copays, prescriptions, non-covered treatments and equipment -- and then their is the basic life costs such as rent, gas, and bills not factored into that 20%. 
Even with all that 'coverage' patients are still turned away from prescribed treatments, or specific hospitals due to state insurance having such huge limitations, unlike private insurances provided by a workplace which can be much more tailored to individual needs. Now, imagine if the Affordable Care Act gets repealed with the next presidency and patients like myself cannot purchase the necessary supplemental plans on top of Medicare due to a pre-existing condition? Where will these "useless 26 year old millennials" be then? 

While I got a bit off topic, you can see why freelance writing is a blessing and a curse. The internet is a hostile place where information is distorted and the general commenter is a vile heathen that gets highs off others misfortune. I will never give up my platform for awareness, so in turn have had to learn to let imbecile comments like this, made by individuals that obviously have no regard for a fellow human, slide off my back -- I actually get a pretty good laugh out of some!

So please REMEMBER, when you read a feature, just because someones name is on it, doesn't mean it is their words, their opinions, or their facts! 

Friday, March 11, 2016

Sometimes Life Is Really Awesome -- Health Update

If you have been keeping up with my blog the last month, you know that this week held a much anticipated moment. This week was my "halfway through Cytoxan" follow up with my lung doctor. This appointment could either be a breaking point, or a huge victory for me regarding the use of chemotherapy.
I can tell you I left that appointment in tears -- happy, happy tears!

Snorkeling or preforming a PFT?!
Thursday morning I went in for my Pulmonary Function test, a procedure that breaks down the performance of your lungs. Ten months ago my lungs started to decline rapidly, suddenly showing evidence of Interstitial Lung Disease (pulmonary fibrosis) in both lobes, and a Chronic Obstructive Pulmonary Disease (COPD). Between my poor working diaphragm due to myopathy, and the decline in my ability to transfer oxygen from my lungs to the blood stream, I was placed on supplemental oxygen, unable to keep up my O2 saturation upon activity. Eventually the issue became severe enough that I was on oxygen 24/7 with my Diffusion Capacity (DLCO) dropping over 20% in function in a very short two month period. Lung involvement is the number one cause of death for Systemic Sclerosis (Scleroderma) patients, especially when it begins aggressively in the first few years of diagnosis. Many physicians will tell you the first five years of your diagnosis are the most important, laying out your prognosis, and the severity of your disease. Being only four years into my diagnosis, on a feeding tube, supplemental oxygen, and having a few less fingertips than I should, meant I would be even less likely to live the ten years I was given in 2011. Things were not looking good, hence the tough decision to start Cytoxan was made. I say "tough decision" because this drug is extremely dangerous in a patient like myself with fragile organs. It also has a very high incident rate of causing both Bladder Cancer and Leukemia. While Cytoxan has saved many patients, its results typical only last five years until the patients body begins to progress again -- and at that point they have already reached toxicity for this last resort drug, leaving them completely out of treatment options... That is the reality I may have to face down the road. However, as you might have inferred, the next five years at that point wasn't something I was sure I would live to see anyway, so I agreed to the treatment with the support of my Scleroderma Specialist from UCLA. 

In August 2015 my ability to transfer oxygen to my blood stream, and other organs was around 60% (DLCO), and the general airflow through my lungs was at 70% (FEV1/FVC). These numbers show evidence of both an obstructive, and a restrictive lung disease; having both trouble getting air into, and out of the lungs -- believe it or not those numbers are considered "mild severity." This Thursday my DLCO was 80% and my FEV1/FVC was around 75%. While my lungs still aren't functioning fabulously, I am getting 20% more oxygen into my body! That is a HUGE VICTORY! My Diffusion Capacity (DLCO) after six months of Cytoxan increased from a 60% to a 80% and I could not be more happy! I don't think my DLCO has ever increased in four years! As I expressed, I am using my oxygen much, much less and this is why. Cytoxan is healing my sad little lungs! All be it, they aren't perfect, but I feel so much better with that 20% increase of oxygen! My O2 saturation is staying relatively stable as long as I am not doing to much physical activity, or sleeping! haha *happy dance* In fact while I was preforming the PFT the technician did a double take on my DLCO values and said, "Wow, did you recently change medications?!" to which I of course chimed in with an enthusiastic, "YES!" 

As you can imagine my Pulmonologist was thrilled! He still wants me in every few months to preform a Pulmonary Function Test, as I still have obvious evidence of lung disease, but was delighted to say my lungs are "almost stable!" I haven't heard the word "stable" in regards to my health in years! Remember, stable doesn't mean "remission, cured, or healthy," it just means "not declining."  I am so thankful for my Pulm, he has fought so hard for me over the last couple years. He has always treated me with respect, and acknowledged the strong voice I have in regards to my health care. He likes to call my Rheumatologist my quarter-back, but in reality he does more for me than any other physician. He is always a simple email or call away, and never hesitates to assist me with any issues I have with my health, or health care team lol -- So thank you!

I am also really excited to report that after three years of struggling with weight loss due to my failing digestive system I have reached the goal weight we set back when we placed my feeding tube in 2014! I stepped on the scale to see the number 151 flash back and me and just about lost it! I have been working with my dietitian and physicians for years to hit the 150 mark, and I am finally there! At the climax of my weight loss I was 5'10" and 119lbs. I frankly looked like death; skin and pointy bones with the horrible paleness of severe malnutrition. I have gained 30lbs and feel amazing! My feeding tube is responsible for most of that weight but, within the last six months Cytoxan has increased my ability to digest and swallow, resulting in assistance with my overall nutritional status. My oral intake is increasing for sure, not perfectly, but something is better than nothing! Swallowing anything still feels like sticky peanut butter since my muscles no longer work, but at least once I get things down the are moving through my stomach! My SIBO is better too! I have been able to cut back my chronic antibiotics drastically, with the end goal being only using them during a flare up. 
Last, but certainly not least, my Prednisone intake is now at 7mg. So far so good. No crazy Vasculitis flare ups, or intense bought of inflammation. Yahoooo! By summer I should be off that horrible steroid -- and possibly be able to see my cheek bones again! ;) 

Oh, and one last physician update! My allergist and I caught up this week, and we came to a conclusive diagnosis: Chronic Urticaria. This literally just means I have hives a lot. He said it's actually really common, and just annoying! lol I'll absolutely take chronic hives over the other possible causes it could have been! I think that may be the nicest diagnosis I have. haha So I am on antihistamines four times a day to keep the welts, angioedema, and itching away.

Can't go wrong with Marc Jacobs -- it's a fact.
I feel my overall emotional status has been well lately too. People keep telling me my aura has changed -- that I seem more confident and happy, which I love! I feel that way too, so I am glad it shows. You want to know why I feel this positive change has occurred? I have been starting my Reiki sessions again, which I feel immensely help my healing process, not so much physical, but emotional. I always feel incredibly serine after, like the weight of my reality is somehow less -- Plus my Reiki Master is the best! ;) Thank you so much for the extraordinary gift of positive energy! I've been experimenting with different pain management, and beneficial mental health techniques as well. I have found that Cannabis gives me a much needed, tranquil break from the reality of constant pain and anxiety. I am able to sit back, forget my troubles, listen to good music, feel no pain, and just laugh. It's so peaceful, and gives me that break I desperately need to function happily -- when I am unable to do so on my own. The use of constant anti-depressants and opiates definitely weren't helping me, or my poor body that was being abused by their side effects. Yay for a useful, safe, organic treatment option that actually works. 

Plus I got a really adorable new backpack to hold my feeding tube supplies on Wednesday! Little things like that make me so happy. I hope everyone is having as good a week as I am having! :) And if you're not listen to '10,000 Emerald Pools' by Borns! It is my new song obsession... it's so serene.