Saturday, November 28, 2015

Chemotherapy Isn't Only For Cancer Patients

When you hear the word chemotherapy what immediately comes to mind? Cancer. Bald. Nausea. Vomiting. Infusions. Sterility. Bone Pain? Upon hearing that word, most people jump to the same conclusions, with the same general consensus on how chemo works, who receives it, and what side effects it has on the body. The truth is chemotherapy isn't only for cancer patients, and affects each patient differently depending on how it is used. 

Chemotherapy is a widely used class of drugs to treat many different disorders including, but not limited to: cancers, blood disorders, and a plethora of autoimmune diseases. Similarly it can be administered in many different forms: intravenously, topically, injected, or given by pill. Each chemotherapy affects patients individually depending on the of type of chemo and the dose given. While many cause major hair loss, sterility, and nausea, others do not. This does not mean however, that the drug being received is not a chemotherapy agent. 
All chemotherapies work homogeneously, to eliminate the growth of harmful cells in the body. Some do this by directly damaging DNA, interfering with DNA building, while others simply alter the DNA in a way we do not quite yet understand. The different types and dosages of chemo given are decided by your physician who can determine what the patient will benefit from most.

Lately there has been stir in the media about a young singer named Selena Gomez battling an autoimmune disease called lupus. Selena stated in a recent article that she was "going through chemotherapy." This statement was met with backlash from every corner of the internet with comments such as: "Chemo is only for cancer," and "You cant be on chemo if you still have hair!" Upon reading these comments I was baffled by what little knowledge the general public had on the effects and uses of chemotherapy! Chemotherapy agents are widely used in the autoimmune disease world in both low doses: to help control an over active immune system, and in high doses: to completely eradicate the immune system when a patient presents serious organ involvement. Even in patients like Selena, who don't necessarily have any visible symptoms, chemotherapy still takes its toll on the body, and is a highly dangerous drug. At low doses the patient may experience nausea, malaise, exhaustion, minor hair loss, mouth sores, and possible damage to ones reproductive system. They may receive their allotted chemotherapy dosing through weekly pill or injection -- though you would never know it.

As an autoimmune disease patient myself suffering from systemic sclerosis (scleroderma), lupus, and vasculitis, I have undergone both low, and high dose chemotherapy. I received weekly injectable low dose chemotherapy for two years, and a weekly pill form for another year after that. At that low dosing I had significant hair thinning, (including my head, eyelashes, and eyebrows) nausea and fatigue a few days following the injection, and damage to my fertility. Most people around me had no idea I was getting weekly chemotherapy, but I was. No matter how low the dosing, the class of drug and what it does for the body doesn't change, simply the side effects are lessened. Chemotherapy is chemotherapy no matter how you receive it, or how much.

Since I now have serious organ involvement with a fatal prognosis I have been moved to the higher intravenous dosing of chemo, one that the society acknowledges due to its obvious side effects. I have lost all of my hair, become sterile, and spent long nights in nauseated misery in the attempt to abolish my malfunctioning immune cells. I must follow this regimen every 28 days for the next year, then be switched back to the low dose weekly chemo for the rest of my life. Chemotherapy never ends for autoimmune patients like myself. 

No, I do not have cancer, but I am going through chemotherapy. 
For some reason the general population cannot seem to comprehend this. They believe chemo is somehow not "real chemo" if it isn't attached to a cancer diagnosis. This is absolutely inaccurate. Our IV bags are brought into the room in the same yellow Hazardous Material Bag, labeled with the same large block letters that read "CHEMOTHERAPY" in all caps, by a nurse who must wear protective gloves when hanging the drug -- just as a cancer patient. 
Again, the fact of the matter is chemotherapy is chemotherapy. Please do not demean patients going through such an aggressive, and life altering treatments if you truly have no knowledge on the situation. The disease you are receiving the treatment for makes no difference to the actual drug, and certainly doesn't make chemotherapy any less "real" -- just ask any patient receiving it. Yes, in the lower doses you will receive far less of the harsh side effects, much less than the typical cancer patient, but that doesn't mean you aren't receiving chemo. You are simply obtaining a dosage that the world is not familiar with, such as Selena received. 

Every patient receiving chemotherapy has a heavy load on their shoulders whether it be for cancer, lupus, scleroderma, MS, PNH, or any other illness. We are all warriors just trying to win back our bodies

Thursday, November 19, 2015

The "Hopefully Soon To Be Rested" Tube Fed Wife

I just have a short update for the blog today! I saw my Sleep Specialist today and he had some interesting revelations for me. What I interpreted from the Sleep Study results as an overall data sum of the entire night was actually an average data sums per hour of the study. Meaning when I expressed in my last post that I awake due to Sleep Apnea 24 times a night, I actually wake 24 times an hour! Whoa! 

Sleep Apnea is a disorder where you stop breathing due to a collapsed airway while initiating, or maintaining sleep for any amount of time. This often send an alarm to the brain to awake, even if you don't remember waking. It highly disrupts your sleeping patterns and causes extreme restlessness. Essentially, I wake up about every 3 minutes resulting in less than 10% of the night in an actually REM sleep. REM sleep is the cycle that causes the complete paralysis of muscles, the suppression of brain impulses, and vivid dreams. This is the phase of sleep that results in a rested feeling if properly attained each night. You can see how this could cause some major issues; sleep is an essential part of the bodies healing, and emotional coping process which I cannot seem to successfully participate in due to this disorder. My Sleep Doc has decided to fit me for a CPAP (Continuous Positive Airway Pressure) device that will constantly initiate air pressure through my nose and mouth to keep my airway open. We will trial this machine for 30 days and record the data to see if I need to alter the air pressure being received, or if I need to move to a BIPAP with would initiate inhalation and exhalation. 

Next week is round two of Cytoxan... The day before Thanksgiving actually! Even though I cannot eat I do still truly enjoy the holidays, even if they are centered around food. I just really like hanging with family and friends! It's okay though, this treatment is so important and I can always celebrate the Holidays another day. The week after that I will be back to the constant appointment grind! lol Finally seeing my Autonomic Specialists about my recent POTS diagnosis the first week of December! Wow, December so soon! Funny side note, turns out I was wearing a mask the wrong week after chemo. I thought I was most susceptible to germs the week of chemo, turns out its the week after! Oops... I think I'll just wear my cool new VogMask the first two weeks after treatment!


Happy almost Thanksgiving! Eat some Pumpkin Pie for me! ;)

Sunday, November 15, 2015

POTS -- But Not The Kind I Keep In My Cubbard

There has been a pretty big transition in my life since I last posted. Unfortunately due to previous chemo damage, malnutrition wreaking havoc, and prior thinning from illness in general, my hair did not make it through my first round of Cytoxan. After stepping our of the shower last Friday I found myself with a large bald spot to the front right quadrant of my scalp. I decided to take this situation and make it one of empowerment, heading to the salon with my best friend and husband to shave my head. I had no idea what my head would look like under my hair, besides for the existence of an odd rash I have been battling due to my connective tissue disease. Thankfully as I sat in that chair watching my hair be sheered off a perfectly round noggin smiled back at me! lol I am actually kind of in love with my new do! -- Who says you need hair to be a confident, beautiful woman?!

My bald head, and a new friend!
Not much medically has been transpiring in my world as of late. I have been trying my best to stay away from the hospital for fear of germs since I chemotherapy has left me with a white blood cell count of 3... My poor little body! So far so good though, no colds, or even a sniffle has come from me! I have of course been continuing to get my weekly saline infusions however; gotta keep those fluids flowing! I did receive some test results from a few procedures I had preformed last month, the Sleep Study, and the Autonomic Nervous System Testing. While I have not reviewed the results with my physicians, I did get to read over the impressions from the interpreting physician.
The sleep study showed I have Moderate Sleep Apnea with my oxygen levels dipping into the high eighties. It also revealed that I wake an average of 24 times a night do to this condition, giving me barley even one hour in deep REM sleep. This would explain why I am exhausted constantly, and never feel rested upon waking. I see my Sleep Specialist this week to talk about sleep aid devices.
My ANS Testing unfortunately didn't have the greatest data due to my inability to preform a few of the tests adequately. Many of the breathing maneuvers that can indicate internal autonomic involvement were not done to a satisfactory enough level to produce data, this is because my lungs were to weak to execute them. The good news is that the tilt table test alone was able to give us a firm diagnosis of my dysautonomia subset: Postural Orthostatic Tachycardia Syndrome. What my physician thought was originally stand alone Autonomic Neuropathy due to my connective tissue disease, turned out to be a whooping case of POTS as well. POTS is a condition where postural changes, such as supine to upright, cause an abnormally large increase in heart rate (at least 30bpm.) Upon standing my vascular system has to work too hard to maintain blood pressure, and blood flow to the brain due to my faulty autonomic system which doesn't tell my vessels to constrict correctly. Patients end up having very low blood levels, or more specifically a decrease in the volume of blood plasma with positional changes causing: tachycardia, low blood pressure, and fainting among other symptoms. I have been prescribed quite a few different medications in an attempt to assist this condition, though the most helpful so far has been high doses of sodium; 6 Grams a day! This helps keep my plasma levels higher which wards off my fainting spells and severely low BP. I meet with my specialist the first week of December to discus the results in detail, and hopefully get a few more answers on how the POTS ties in with the Autonomic Neuropathy.

On set with the film crew!
On the calendar for me this upcoming week will be an appointment with my Rheumatologist to review my first chemotherapy labs, a consult with my sleep specialist regarding sleep aid devices, and of course some weekly fluids at the infusion center. Then, the week following I will have my second round of Cytoxan.
In other news, some wonderful awareness opportunities have been in the works lately!  I had the pleasure of filming a short documentary for a wonderful organization called Faith Counts this past week. The video will be in production over the next month and I cannot wait to share the finished product with you all! I also had the honor of speaking to class of nursing students at a college in my area. I was invited to share my personal Scleroderma experience with the future faces of patient care and couldn't have been more excited! It looks like there will be a few more opportunities to share my experience in this manner and I am really looking forward to it! I love speaking to medical students because I get to use all the acquired medical lingo from my many years spent as a professional patient -- and I don't even have to explain the acronyms! haha I cant wait for my next college speaking gig in January!

Wednesday, November 4, 2015

Living With A Terminal Illness vs. Dying

After rolling out of bed a disheveled mess I got ready to begin my daily medical rituals; I started my tube feeds, took a couple fist fulls of medication, did a few breathing treatments, rubbed myself down in Biofreeze, and then turned on my laptop. (The laptop obviously ins't medical, it just takes my mind of how badly I hurt in the morning.) It was going to be a good day! I mean how could it not? The first things I see when my computer whirs to life is my face on the front of one of favorite websites; XOJane. Next to me my little oxygen concentrator started beeping, alerting me that I had waited to long to take a breathe. (How embarrassing. I had literally forgot to breath out of excitement.) I took a nice deep breath through my cannulas, and got ready to read my article!
The title read:Why I still Want to Looking Beautiful, Even Though I'm Dying

...Wait a minute, what!? 

Dying?! What did they mean dying?! I know I am severely ill, fatally ill in fact, but "dying"? I mean, if we are being honest aren't we all technically dying? It's just common courtesy not to announce it right? From the second we are born our timer has begun towards our imminent deaths. Death is the one thing humans have yet to find a means of escape from. It awaits each of us at an unknown place and time. I do not classify myself as "dying" anymore than you would classify yourself as "dying." Now don't get me wrong, my death is in the carpool lane, while your death is stuck in rush hour traffic, but still, I wouldn't call myself dying. Yes, I have a terminal illness (Progressive Systemic Sclerosis) that will take my life long before I want to leave this earth. One that leaves me strapped to constant hospital stays, appointments, procedures, and treatments. One that leaves me in pain more often than not. One that forces me to tote an oxygen tank, a feeding tube, and a central line for survival. While yes, I reside in a body that is slowly failing, leaving my with a reduced time to live -- dying is still not the word I would use to describe myself.

December 2014
The reasoning behind my thoughts? (I mean, I am sure you are wondering what I consider dying if this inst it!) The truth is, I have faced death before; it was December of 2014. I was in every sense of the term dying, lying paralyzed from head to toe in a hospital bed while a nurse suctioned my spit so I didn't drown in it. There was little hope for a recovery after a sudden onset of an illness called Guillain Barre. Doctors were a constant ebb and flow out of my room on the Neurology Critical Care floor during a month long admission that nearly took my life. Family and friends had driven across the state to say their goodbyes which I have little, to no memory of. The bright lights of the OR, blood, pain, tubes, and a hopelessness mixed with shear terror as I faded in and out of consciousness are my only memories spanning over that hell of a 24 days.
There are plenty of mental scars (and a few physical ones too) from that month of "dying" that I encountered. Dying changes you as a person, changes your perception, and leaves a deep wound that can never be healed. I attended therapy for severe mental trauma to overcome the reality that I had in fact almost lost my life. It had placed me in a dark bottomless pit that I still now tremble to recall. The memories of Acute Rehabilitation where I relearning how to sit up, walk on my own, use my hands, and get dressed by myself at 23 years old haunts me still. The memories of medical procedures gone wrong (as in: botched spinal taps), and treatments that only hindered (as in: gave me Meningitis) instead of helped filled my dreams for months. Yes, I had in every way, shape, and form been "dying" last December. I remember what dying felt like. I remember the feeling of emptiness it brought to the center of my chest, the way it filled everything with blackness. The fear. I had never before in my life felt like I had lost a battle, but I knew that I had lost this one. There was no fight left in me, my body was too weak to continue, and my mind followed. While I lay paralyzed in that hospital bed, it was as if my ability to fight, to even think about continuing had been paralyzed as well. You can tell when it's the end, as your mind starts to slip, you can feel it closing in... and I was thoroughly surrounded. Somehow, someway I recovered. My body pulled through, and so did my mind... mostly. A piece of me was definitely lost during that admission, something I cannot quite put a finger on. Being that close to death, to actually be dying is unlike anything I have ever experienced, so dying is not an adjective I take lightly.

September 2015
Currently I am "living," and while my version of living has some extensive differences than the average individual, I still consider myself to be very much alive. I partake in shenanigans with my best friend (Hi Makanda!) every Friday night. I head to the craft store on Saturdays and buy 30 dollars worth of art supplies to make something I probably could have bought off Etsy for 7 dollars, and I go out on date nights to awkwardly watch my husband eat a cheeseburger since I cannot. (Which I find oddly satisfying!) If I was truly dying none of these things would be possible, living wouldn't be possible. I know this from experience. I no longer feel the pull of death like I did during December, no longer feel surrounded, and crushed my imminent demise. So no, I am not currently dying, because I know what dying actually feels like -- and this is definitely not it. I can still do things that bring me joy, still take part in activities that bring me happiness; when I was dying in December there was nothing but darkness and fear. I had completely lost my ability to do anything but lay hopelessly and wait for death.

I feel fortunate to live while my body slowly deteriorates, to not be bound to death like I was in December even though I am riddled with failing organs, and a fatal prognosis. Someday again I will be "dying," lying in a hospital bed with only days left ahead of me -- and truthfully yes, if you want to define "dying" as losing a battle to illness then I am in every sense of the term dying... but personally I like to call residing in this defective body, riddled by disease: successfully, and enthusiastically living.

Sunday, November 1, 2015

Cytoxan Round One - Health Update

After months of anticipation, preparation, insurance appeals, and tug-a-wars between my physicians I found myself wandering the hospital halls on my way to my first round of chemotherapy. From the moment we arrived at the infusion center I knew I was right where I belonged! The nurse walked us into a large private room which was unlike any infusion center I had seen at the local hospital I typical attend. Everyone on staff was extremely attentive and invested in their patients, you could just tell! The procedure was thoroughly explained to me before we began, and all the meds were described in detail, including a full list of side effects. Right off the bat we had a fabulous Port access which always sets a great mood in my opinion! ;) The infusion started out with some saline, followed by Mesna, a medication that protects your bladder from the harsh Cytoxan. (Without pre medicating with Mesna you will find yourself peeing blood, or ending up with bladder cancer.) About an 1-2 hours into the Saline and Mesna we started the Cytoxan drip which actually only last about an hour. The bag was brought in by a gowned and gloved nurse in a bright yellow bag that read CHEMOTHERAPY in all caps. It was actually very intimidating! She carefully hooked up the medication and we began! Everything went extremely smoothly and I had no reactions. After the bag was empty we ran more saline and another batch of Mesna. The entire encounter only lasted about 4 hours.

During the infusion I made sure to suck on some lemon drops which I heard can help nausea during chemo! I also kept myself busy with a nice big coloring book, and the company of my Mother and best friend! The side effects of the Cytoxan really didn't hit me until about 6 hours after the infusion. That night I suddenly become completely exhausted, as in 'could barley make it from the couch to the bed' exhausted. A small headache had begun, and a bit of a spinning sensation began to take hold. I quickly dosed up on some Zofran which is an anti-nausea med. Luckily this kept my vomiting at bay! There were definitely some nights where I woke up dry heaving over the side of my bed, but no serious vomiting took place. For the most part the few days after chemo were mostly filled with sleepiness, nausea, a slight headache, and some hives/itchiness. I laid on the couch and binged watch Netflix for a full 72 hours! haha Once I hit the fourth day I started feeling like myself again which was great!

To keep in mind: the dosing of Cytoxan I received was my "initial dosing," meaning a smaller than normal amount to simply introduce my body to this drug. I did not received a full fledged dosing such as the ones I will be receiving from this point on. As of my next infusion we will be moving up with the toxicity by increasing my dose, tripling what I had this week by my third infusion! As I am sure you have guessed each infusion will be harder, and more toxic, meaning each infusion I will get sicker, and handle it with less and less grace. While this round may have been "easier" than I imagined, the next few, especially the third and fourth dosing, will be extremely unpleasant. I am very lucky that my physician thought to work me up to the complete dosing since my body is so sensitive! I really believe this will help my body adjust so much better to this harsh poison. Unfortunately since my initial dosing was the 27th of October my next rounds will fall the the last week of every month, meaning the day before Thanksgiving and even Christmas Eve... I did not plan that well! haha

Since the infusion things have been pretty quiet. I have been taking it very easy, and being sure to wear a mask if I leave the house. I will have to head up to the hospital at the end of this week to take some blood panels and see "officially" how my body reacted to the medication. In the mean time I will continue to take it easy and probably stay at home for a few more days. One thing with Cytoxan is that you have to be filled with a ton of fluids for the first few days! They ask you to drink at least 3 liters of water a day to make sure you are flushing the chemicals out of your bladder adequately. Luckily this isn't too hard for me since I can pump water though my feeding tube all day! (Tubie win!) The only problem is that you have to pee constantly, and since you have a dangerous chemical passing through your bladder you are not aloud to hold it! So if I have to pee everyone better clear the way! lol

Speaking of my feeding tube, the balloon that holds it into my stomach popped this morning! The tube was just kind of falling out of my stoma which was causing some pain. Luckily I had an extra tube at home as I had recently scheduled an appointment to see my doc this upcoming week to change out the tube. Unfortunately it wasn't going to last that long so I had a choice to make: 1. Wait hours in the ER for a doctor to do it OR 2. Do it myself at home. (Yes, people do this all the time.)
I decided to go ahead and just do it at home in the end which was quite an adventure! I created a sterile area, put on some gloves and pulled the tube out of my stomach. Since the balloon was deflated it just kind of slid right out of the hole. It was a pretty odd thing to do to yourself I am not going to lie! lol Next came placing the new tube which was even weirder! I lubed up the tube (with KY because I didn't have any surgical lube haha), placed it into my stoma, filled the balloon and TADA! My new tube was in place. I was seriously so proud of myself! I'm not sure why it freaked me out so much in theory because it was actually super easy and painless! So now I have a shiny new tube and don't have to drive three cities away to see my doc for 15 minutes! Woop!

I even got to enjoy my Halloween! Mask, oxygen, feeding tube, tons of equipment and all. I was the "Diet" Kool-Aid Man. OH YEAH! Halloween is one of my favorite holidays because I absolutely adore making costumes! It can be tricky having medical devices though because everyone just assumes they are part of a costume. It makes for some really awkward conversations having to explaining that you are actually just really ill! lol We stopped by a Krispy Kreme Doughnut shop on Halloween because we passed one and Noel thought it looked yummy. The host asked us what type of free doughnut we wanted, and Noel and I were both like "Wow, everyone gets a free doughnut on Halloween!?" And the poor guy behind the counter goes "Yeah, anyone in a costume gets a free doughnut!" ....I was not wearing my costume. Like I said, awkward! lol But hey, I'll still take the free doughnut! ;)