Thursday, December 31, 2015

The Grinch That Barfed On Christmas - Health Update

I thought I knew. I really did. I thought I knew what nausea was -- I was wrong.
Nothing I have ever been through quite compares to chemotherapy, besides perhaps almost dying of Meningitis & Guillain Barre last December. I have been on low dose chemo for years, and was working up to a full dosing of Cytoxan over the last three months, but none of it even remotely compares to the high dose I am now enduring. I can honestly say, now that I have encountered both, that there is an extensive difference in how the body responds to low, and high dose chemotherapies. While yes, they are both the same drug, one dosage provides nausea that one will never be able to comprehend until they have physically received it.
Dang. I thought I knew nausea on 25mg Methotrexate. Nope. That was a walk on a beautiful sunny beach compared to high dose Cytoxan. This is a whole other ballgame.

Gettin' Christmasy at Chemo!
Let me tell you about my holiday. Cytoxan was on the 23rd, and that night things started to get funky. Dry heaves, extremely red in the face, head pressure, sweating, hot, hot, hot, and exhaustion. The next day I was lethargic, freezing, and unable to keep my eyes open. The dry heaves increased as the second night rolled around, turning into full fledged barfing episodes all over my bed. Now, since my esophagus has zero muscle function barfing is somewhat of a challenge. It can happen, but it's not so much a projectile vomit one pictures in their head. It is more of an urp that takes way too much effort. It's noisy, and messy, and comes out in wild streams. After vomiting to the point of becoming teary eyed, and getting absolutely no sleep, I found myself lying in bed all the next day in and out of a sleep deprived consciousness. I couldn't run my tube feeds adequately, so was luckily I had the IV fluids at home. The nausea was like a ton of bricks; no medications would touch it. Holy hell it was misery. The next day of course was Christmas -- the third day. Everyone familiar with chemo will tell you that the third day after your infusion is the worst. Well, I attempted to see my family on Christmas, only to barf all over my step-dad -- twice. I then proceed to barf in the hallway as my family helped me into the bedroom to rest. (For those of you wondering, as I am sure someone will suggest it: yes, I tried medical marijuana for nausea. No it did not work.) Things continued like this until about four days post infusion. I will here by be naming Cytoxan: "The Devils Piss."

On the opposite hand, I am already starting to see some improvements in my everyday life thanks to this hell of a drug! Where once I was unable to climb a flight of stairs without stopping for rest due to exhaustion, and shortness of breath, I am now able to do so with proficiency! I noticed it the other day; I needed to run out to my car because I forgot my phone. I didn't want to be attached to a bunch of tubes and tanks for such a short trip so I unhooked my feeding tube, and left my oxygen inside. As I walked up the flight of stairs (8 steps) to return to my apartment I didn't stop, and I wasn't huffing and puffing at the top! I know that seems minuscule, but it is actually a huge deal! This means that the Cytoxan is removing some of the inflammation and other crud from my lungs, leaving me able to breathe better. From that moment I began taking my little O2 sat reader everywhere with me to see how my oxygen levels were doing at other times during the day. My oxygen stayed stable when at rest (excluding sleep of course), and stable-ish while walking short distances; only when I began to exert myself with longer trips to say: the mall, grocery store, or events did my saturation begin to decrease to the upper 80's. (Also if  I talk with too much excitement! lol) It seems the duration of time I push my body weighs into my saturation levels heavily. I noticed when I do not use my oxygen I get tired very quickly, and am not able to be out of the house quite as long. I think the low O2 upon a long day has to do with my weak diaphragm as well. My main goal with Cytoxan is to rid myself of the need for supplemental oxygen completely, and while I am no where near that goal yet, I am definitely able to start decreasing my usage which is a huge victory! So if you see me taking short trips without my O2 that is why. I will of course be smart about this opportunity, and always have a machine with me while I am away from home. I still need the assistance from the supplemental oxygen, just not constantly like I had been using it the last many months.

I also have noticed some improvement with oral intake. While my esophagus will never have muscle function like it used to, the inflammation that was once lining it has eased up incredibly! This means purees, extremely soft foods, and liquids in very small amounts/bites can be dropped down my esophagus to the stomach by gravity. Unfortunately my intestines still aren't playing very nicely and like to cause quite an uproar when I attempt any oral intake, but my gastroparesis does seem to be slightly improving at least. Due to the intestinal issues that cannot really be tamed by any medication, my digestive function, and nutritional absorption will always be very poor, leaving me tube fed indefinitely for adequate nutrition. However, that doesn't mean a bit of recreational eating (even if it comes with misery) can't be had every once and a while!
So far I have had some yogurt and it went well -- if you don't count experiencing heart burn for an hour then throwing up... Maybe next time! lol ;)

How amazing is Mount Rainier made out of lights!?

I did get to experience some fun this holiday season. I attended an awesome event called Zoo Lights with my best friend. We ran around the zoo/aquarium with tanks, tubes, and masks while every passerby looked at us like we were crazy -- or possibly patient zero. We had an absolute blast, and did just about everything, from camel rides, to the carousel, to watching sharks swim by. Even though my body is now plagued by fatigue, sore joints/muscles, and will need a good amount of rest to recoup, living like a normal person even for just a night is always worth it - I even wore my fancy wig!

Happy New Year World!


Sunday, December 20, 2015

Just Call Me Chanel MD - Health Update

This last week, I saw my Pulmonologist and performed my routine PFT (pulmonary function test). Unlike most patents, I perform this test every 2-3 months, instead of every 6, as my lungs have been relatively unstable in their values since summer. A PFT is preformed in a small glass box with what looks like a snorkel jetting out at you. You are to breathe into the snorkel using different techniques to asses your body's pulmonary abilities. My results tend to fluctuate some, as most patients do, but lately they have been taking great bounds in the wrong direction. Luckily, I stayed stable in my results this round. While we always hope for an improvement, I'll take (relatively) the same results as my previous test over tanking any day! The Cytoxan should yield better PFT results in the upcoming months if the drug is properly doing its job. So hopefully by the next test we will see some improvements!

I started home infusions this last week as well. I now have a nurse arrive to my home once a week to access my port so I can run my own IV fluids throughout the week! It is incredibly convenient, and kind of fun! I feel pretty accomplished being able to run my own medical equipment and provide myself fluids. I even get to de-access my own Port! Yup, that's right! I get to remove that giant needle from my chest all on my own! ;) It is so awesome! So far everything has gone extremely smooth, and I have met some great nurses already. My house looks like a little hospital with all my medical equipment between the central line, feeding tube, and oxygen stuff; our fridge is even full of big saline bags! lol My poor husband! So if you see me with a device sticking out of my chest, that's just my new normal. My port will be accessed 4 days a week from now on.

After a month of waiting, I finally had my appointment to have CPAP training. There was some kind of mix-up with the orders so the home health care company didn't receive them from my doctor till last week. Turns out the home health care headquarters are only about 15 minutes from my home, which is massively convenient. I arrived and was whisked back to try on masks, and trail my device. The CPAP I received is brand new on the market, and extremely quiet! It's so small it doesn't even take up half my mini nightstand. We had some trouble finding a mask since my face has some very distinct features, but eventually found a full face mask that fit well. So far sleeping with it has been a breeze, besides for the fact that it leaves big hives on my face when I awake. I think my extremely sensitive skin is very unhappy to have something suctioned to it for 6-8 hours. I will probably call the company later today to see if that is normal your first few nights, or if it's just over sensitive me. I will trial the CPAP for 30 days and then meet up with my doctor to decide if the device is working or not. Due to my weakened diaphragm we were unsure if I would need a BIPAP or not. I am having a bit of a hard time breathing out with the continuous positive pressure since I only have about 20% use of my diaphragm. The BIPAP however would breathe in and out for me. So I guess I will find out if I am switching when I see my Sleep Pulmonologist at the end of January.

(Gross alert! Skip paragraph if you don't like bodily fluids! lol) Friday I woke up in some discomfort, feeling a bit nauseous and bloated. I noticed my feeding tube had become looser than normal so I checked the ml amount that typical filled my anchoring balloon. Where there should have been 15ml, there was only 1ml. I quickly filled the balloon back up only to have water, and puss gush out of my tract that holds the tube in place. Figuring the balloon had ruptured in my sleep I called the doc who wanted me to come in and be seen. Typically I would have just swapped the tube out myself but, since there was a good amount of puss, and pain, I was asked to not do the procedure myself until I was evaluated. Once I arrived to the physicians office they sent me straight down to the Emergency Department. Figuring I had an abscess, we ran CT scans, and x-rays attempting to find the origin of the infection now oozing out of my stoma. Unable to locate anything highly abnormal after a long 12 hours in the ED, we decided to remove the current tube and place a fresh one. I went to pull out the old tube and 'who only knows what' came rushing out! Yuck! Luckily, this event pretty much explained the entire situation. When my balloon ruptured the night before all that liquid, and the now free floating stomach acid, had moved into my tract, leaving it caught between my stomach, and abdomen wall. Yes -- it is as painful as it sounds. In turn the tract become aggravated and pussy, mimicking the look of an infection. It was a rough night filled with pain killers, nausea meds, and bodily fluids that no one should see escape a hole in their body. lol Once the new tube was in place, and the extra nasty fluids had been drained, I immediately started to improve. I will be a bit sore for a while but, no major injury, or infection ensued. As a funny side note, all the physicians in the ED were surprised when they found out I remove, and place my own tubes. (Probably a little relieved as well! lol) The look on their faces were priceless when I yanked that popped balloon out, then handed it to the one standing closest to me; he particularly looked really grossed out actually! haha I don't blame them though, they weren't GI doctors, so they probably don't see that everyday! Just call me Chanel MD ;)

Today I did something I haven't done in over 5 years, performed. Way back before illness overthrew my life, I was a classical vocal performer; music was my world. I had an almost full ride scholarship to a wonderful college, took part in multiple vocal competitions (which I normally won), and performed on stages for hundreds of people. There was no rush that quite matched you and a microphone staring out into a dark venue knowing everyone attending was listening to you. Well, Scleroderma stole that voice from me, the one that opened doors to my world. Thick fibrosis now fills my vocal chords and lungs, and my diaphragm has but a measly function; it is simply no body for a singer. Due to this change in my voice I was too ashamed to sing over the last many years. I wanted people to remember me as my old voice: the one that brought tears to their eyes, not laughter. The last few weeks I have been mulling over in my mind the joy that performing gave me, the rush and excitement it brought to my life. I missed hearing the last note of my favorite aria echo in a performance hall. I started to think about all the posts I have written about accepting ones new limitations when you find yourself stricken by illness; all the posts I wrote about doing what makes you happy, and realized -- I wasn't taking my own advice. No, my voice is not the award winning Soprano it used to be, but performing still brings that thrill to my heart, so why not? This is me, this is who I am now, and I must accept that. Today I sang "Oh Holy Night" for my church's Christmas program, and it was the most fun I have had in years! I may not have been on pitch at all times, and I may have cracked on every high note, but that excitement of performing was still there! :)

Tuesday I have my third round of Cytoxan so, if you don't hear from me for a little bit, that's why! I hope everyone has a fantastic holiday! Merry Christmas and a Happy New Year! ...Though honestly the new year is never very exciting for chronic illness patients as our insurance deductible normally restarts! lol As a little gift to my readers, here is the most epic Santa picture ever taken! ;) Feeding tubes, central lines, oxygen tank, bald head, and all!

My best friend and I may have frightened Santa! 

Saturday, December 12, 2015

Ten Awesome Perks Of Medical Hair Loss

Lets face it, when it comes to medical hair loss there are a lot of negatives. An individual's hair is a focal point for society, and is often one of their most beloved physical traits. Losing that familiar identity can be a rough transition, especially when it's forced upon you by an illness you never asked for. I recently found myself bald while receiving chemotherapy for an autoimmune disease called Systemic Sclerosis. (Yes, chemotherapy is used in other illness besides cancer, read about it here!) Once a woman who spent hours primping her features to perfection, I now found myself with a very conspicuous, very shiny bald head. I have decided however, that there are actually some pretty awesome perks to rocking the bald look!

1. Inclement weather doesn't bother me in the least!

Pouring rains, heavy winds? Bring it on! I no longer have to hide a perfectly executed Pinterest inspired hair-do under an umbrella or hood. No longer do I worry about the wind tangling my curly locks in my favorite statement necklace. My bald head fears no act of mother nature -- well besides snow, that can get pretty cold!

2. I can try on as many shirts at Target as I want!

Worried about messing up that perfect top knot? Not me! I can pull as many t-shirts, dresses, and sweaters over my slick head as I please -- with no consequences. I don't worry about catching my hair in that adorably buttoned top, or ruining my pony tail on a built in necklace collar. Target has an unlimited dressing room item amount, and I am about to go for the record!

3. I can sleep in another half an hour every morning!

I used to take about half hour every morning to play with my hair. Maybe try a new style from my favorite magazine, or push in a few bobby pins. I would straighten my bangs, curl the rest, or add in a cute headband for the day. Creating a flawless look to match my style was something I truly enjoyed -- but you know what I enjoy even more? SLEEP! No hair means no prep. I hit that snooze button with gusto every morning! Take that chemo!

4. Fancy events are so much less of a hassle!

Worried about how to achieve that detailed 50's hairstyle with your new tea length party dress? Nope! I just slap on my fancy outfit and make sure my red lipstick and cat eye liner are on point! I don't have to deal with the tricky correlation of hair and outfits any longer. Saving time, money, and possibly the outfit, if I forgot to put it on after I started in on my luscious locks. Don't you just hate when you have to wiggle your cute top over your already done up 'do' just to get make-up and hair product all over it!?

5. My sink drains have never run smoother!

This should probably be number one. (I am sure my landlords like me a lot more as a bald woman than they did when I had hair!) No more snaking out the tub drain before every shower, and no more sinks backing up when I try to wash my face at night. Drano is no longer on my shopping list!

6. I save tons of money on hair care products!

Shampoo, conditioner, gel, hairspray? No thanks! Not to mention the hairdryers, hair straighteners, curling irons, etc! I cannot even begin to tell you how much money I have spent on those babies, too much if you ask me. Not to mention all the money I save on salon hair cuts!

7. I never have bad hair days!

Please -- I woke up like this!

8. My showers last about two minutes!

Body washed? Done. Need I say more?

9. I never have to worry about bad hair cuts!

Remember leaving the salon in tears over those bangs that were too short, or the pixie that was suppose to be below your ears, not above them? Yes, we all do. (I am sure each of you reading cringed at your computer remembering your last botched hair style.) Yikes. No longer am I susceptible to a stylist who: "does this kind of cut all the time honey!"

10. I still look flawless when I work out!

Okay, lets be honest, I don't work out! (I mean who has energy for that on chemo!?) However, if I did hit the gym I wouldn't ever have to worry about that cute guy on the treadmill seeing me sweating like a pig. I don't shed a moment of worry over dripping, wet hair from perspiration. My bald head looks even better when it's glistening from physical exertion!

The author, Chanel White, rocking her bald head!

Monday, December 7, 2015

Cytoxan Round Two vs. The Hulk - Health Upodate

Round 2 of 12 
Two weeks ago I received my second round of Cytoxan. (Wow, two weeks since an update!? Oops!) The infusion went well, and the dosage was upped by an extra 250mg. This round brought more nausea, and some extra fatigue, which my team was expecting since we are increasing the dose each time. There was one issue during the infusion, and that was a mix up with the medication (Mesna) that is used to protect my bladder from the harsh side effects of chemotherapy. Apparently the orders expressed that I was to pick up the dosing of Mesna, in oral form at my local pharmacy, instead of receiving it intravenously during my infusion like last time. (Which is still unclear if that was actually the case of just what the hospital told me.) This of course turned out to be inaccurate, but I had no way of knowing since I am unfamiliar with the medication. I quickly called my physician's office once I was informed by my pharmacy that no one carries the drug outside of the hospital. They were extremely surprised that the hospital did not provide me with the Mesna. After some phone tag with different hospitals, and my physician's office, it was decided that there was nothing they could do (which was NOT okay) since the time window to receive the drug to reach efficiency had passed. So basically, due to a screw up, my bladder was left unprotected from this round. I am absolutely following up on this oversight with my physician's office and the hospital where I received my Cytoxan. I will not let something like this happen again.The few days following Cytoxan were filled with nausea, a constant dosing of Zofran, and resting on the couch watching movies. Thankfully the effects only last about 4 days till I begin to feel human again.

Last week I had two appointments, one with my Autonomic Nervous System Specialist (Neurologist), and one was with my Gastroenterologist. The appointment with my ANS Physician was to review the results of my Tilt Table Test. In one of my last posts I had expressed that the results showed I had a form of Dysautonomia called POTS. (Postural Orthostatic Tachycardia Syndrome) While this information was accurate, my specialist informed me that my results actually indicated that I have a specific form of POTS known as Hyperadrenergic POTS. This is an uncommon form in which the body does not correctly regulate blood norepinephrine levels, leaving them extremely high. Norepinephrine is also known as "the stress hormone;" it is the bods y'"fight" response hallmarked by a thudding heart beat, tachycardia, heavy breathing, increased sweating, and a state of anxiety. Essentially with too high levels of this hormone, you are an adrenaline pumped mess at all times, leaving your body in tremors until you lose consciousness from sheer overload. It is pretty miserable. I imagine it's what the Hulk feels like! lol ;) Good news is, it is highly treatable with medications that block norepinephrine. My doctor placed me on a drug called Propranolol which has already successfully lowered my resting heart rate (yes I said resting!) from 110bpm to 78bpm! I cannot tell you how good it feels to not have my heart exploding out of my chest! The other useful treatment is the use of salt tabs and saline, which we began when we first suspected POTS many months ago. My Saline infusions will be upped from once a week, to twice a week since we now have a firm diagnosis. Even more exciting though is that these saline infusions will now be at home! Due to some confusion between the ordering physician and the local hospital I receive my fluids at I was able to secure a prescription for home infusions instead of trekking to the hospital twice a week on top of all my other appointments. This means a nurse will come to my house twice a week to access my port and run fluids from the comfort of my own couch. Awesome right!?

So many tubes! Mmmm Saline!
The appointment with my GI was basically just to check in, reevaluate my medications, and of course get a big hug because she is my favorite! My GI has always been my most bothersome system however; with the progression of my other organs, the GI tract has been relatively quiet for a change. My GERD and SIBO are both well under control on my current medications which is seriously a miracle! Finally, after a two years of messing with medications my system seems to have found a sweet spot. This doesn't mean that my organs are magically cured and I can eat meals again; it just means that we finally have found the right cocktail of meds to prevent me from barfing while simultaneously crapping my pants. Score! 
In all seriousness though, I am very happy with my digestive tract right now. It has been so nice to me lately I have even been able to have some small holiday snacks like Hot Cocoa without a violent reaction! (Give it sometimes it doesn't go well, but I have had a few successful cups!)  Hopefully this will continue through the Christmas season!