Friday, October 16, 2015

The Torture Table - Health Update

The weeks are slowly counting down, and all my pre-chemotherapy ventures are underway! My first round of Cytoxan will be October 27th, with another round following each month for the next 6-12 months. I am mentally preparing for this new chapter in my life, but also physically preparing. This week I had some preliminary vaccines, one is was the drug Lupron which will put me into a chemically induced menopause (yay for hot flashes! lol) in hopes to preserve my fertility, and the second was a Prevnar injection, conceivably to prevent me from contracting Pneumonia with my weakened immune system. I am also beginning small endeavors such as finding comfy chemo clothes, locating friends and family to thoroughly "chemo clean" my apartment before infusion day, and shopping around for some pretty head scarves! For more information on how this treatment is used in a Rheumatic disease like Scleroderma, Lupus, and Vasculitis (all three of which I have) visit this link: Cytoxan and Rheumatic Diseases, and for more information on the drug in general (as it is typically used for many, many types of Cancers) visit this link: ChemoCare: Cytoxan

Wednesday I had my second round of Autonomic Nervous System Testing. As a quick recap, I recently became a patient of a renowned Autonomic expert who has taken great interest in my case. He referred me to redo the autonomic testing I had done a couple years ago so he could have updated data, which will lead to a more accurate diagnosis. This particular set of testing is actually the least favorite out of the incredible list of procedures I have preformed. It is not invasive, and it is not particularly painful but, it takes a massive toll on the body of someone with Dysautonomia. The test last around three hours and includes being strapped to a table the entire duration with multiple blood pressure cuffs down your arm, all the way to the tip of your finger. There are three distinct portions of the test: 

  • 1. The Quantitative Sudomotor Axon Reflex Test (Qsart), which evaluates the nerves that regulate your sweat glands in different areas of the body. This portion is actually slightly painful as the test feels much like you are being rubbed with stinging nettles down the entire left side of your body for 5 minutes straight. 
  • 2. Breathing Tests composed of Valsalva Maneuvers to measure how your heart rate and blood pressure respond to forceful exhaling. I am always bad at this portion since my diaphragm is so weak; while patients breathe out to typically get a small dial to reach 40mm, I was unable to get it to reach even 15mm... so we may not have enough data to accurately diagnose anything from this portion. 
  • 3. The Tilt Table Tests (or as Dysautonomia patients call it: The Torture Table Test) which monitors the blood pressure and heart rates response to change in positions. While strapped to the table you are lifted from lying flat, directly to standing. While this would not cause any issue for someone whose autonomic nervous system responds correctly, compensating for this positional change by constricting vessels and redirecting blood flow, a Dysautonomia patients response does not work leaving the brain void of blood and their heart racing uncontrollably. Typically patients with Dysautonomia become severely unstable during this procedure with a heart rate ranging anywhere from 150-200bpm, and lose consciousnesses almost immediately upon being positioned upright. 

The Torture Table in all its glory.

You can see why I loath this test whole wholeheartedly. During my performance of the Tilt Table I blacked out, then attempted to compose myself with just enough time to not choke on my own vomit. It is truly a miserably three hours that I hope to never have to endure again... though that's what I said last time! Let's hope my doc has enough data for that to really be my last go! Results will arrive in December. As a comical side not, while preforming the test special electrode type stimulators are put on your feet. For some reason they just wouldn't stay on my so the tech had to re-adjust them multiple times. Finally in frustration she said, "Has anyone ever told you your feet feel very hard? Like extremely bony almost?" I tried not to laugh ;) Why yes, yes they have! Apparently these particular electrodes do not like hard Scleroderma feet! lol We ended up having to bring in another tech to hold the stimulator to my foot while the original tech ran the test. Oh the life of a Scleroderma patient!

Thursday morning I saw my Scleroderma Specialist form UCLA; I feel extremely lucky to be in his very competent care. He has made such a vast impact in my treatment plan, and hopefully the longevity of my life. During the appointment we went over some recent procedure results, did a physical exam, spoke about my upcoming Cytoxan Infusions, got some baseline labs drawn, and lastly made the decision to prescribe my fist sleeping medication. It has been months since I had a restful night; I have both trouble initiating and maintaining sleep, for this reason he prescribed Trazodone. This is commonly known as an antidepressant, but has been found in small doses to help insomnia greatly. Hopefully this drug will help get the permanent bags under my eyes to recede! lol I never really know the full outcome of his appointments until his visit summery arrives in the mail, which typical takes about a week. This particular physician does things a bit differently than my others, so I will have more to update about this appointment in upcoming blog posts.
That afternoon I headed off to my Primary Care Physician to get my Lupron and Prevnar vaccines. I must say, I was not expecting the Lupron to be as bad as it was! When the nurse pulled out the "kit" containing the administration device it honestly looked quite similar to a spinal tap! The needle is extremely long in length since it is an intramuscular shot, meaning the gel (yes it is more a gel than liquid! Ouch.) inside the syringe must reach deep muscle tissue, not just the top layer of fat like most injection. Unfortunately this particular vaccine also contains a TON of fluid, meaning the duration of injection time is long, long, long! And since it is more of a gel than liquidy it cramps the muscles horribly! Dang. That was one un-fun shot! I'll be sitting on one butt cheek for the next week! haha Thankfully I only have to get this done once a month! Next came the Prevnar (Pnemonia Vaccine) which was a walk in the park, just your typical shoulder shot. For some reason we were in the pediatric room so I got some pretty sweet pink band aids and a Batman sticker! haha ;)

Friday morning has rolled around and I am feeling pretty beat. My body feels as if someone had popped all my joints out of socket while I slept, and beat the rest of my with a bat. Urg. I am guessing my poor body is just overloaded with foreign substances after yesterday and is fighting back. Boy am I miserable today. Absolutely ever inch of me is wreathing in pain. I did have my weekly saline infusion this morning which seemed to take the edge off the lovely migraine I woke up with at least. Hopefully tomorrow will be a better day!

A very exhausted Chanel.

18 comments:

  1. Trazodone is great, but leaves me with a headache in the morning. I know, that's the least of your concerns :-)

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  2. Trazadone works too well with me. It puts me so asleep I end up aspirating. I have had to cut a 50mg pill into fourths to keep this from happening, It does help me get to sleep and stay asleep though. Just be careful with the dose.

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  3. Trazadone worked for a small period of time for me and then caused spiraling anxiety. Rhen my pharmacy suggested melatonin 10 mg. That works! And if all else fails benedryl. For short periods of time. Which is hopefully helpful to fell as refreshed as you can for bit.

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  4. Eek, I'm about to start Lupron shots as well (for endometriosis), but had no idea they were going to be as bad as you described. I already have a fear of shots, now I'm really nervous! Good luck with your journey. Your blog always makes me smile. I love that you still maintain a positive outlook on life, even after so much. One other thing I love about you is you keep it real. When doctors are a disappointment, you have no problem calling a spade a spade. I've recently had to deal with a few doctors who weren't interested in helping to get to the bottom of why I've had so much pain recently. I couldn't believe it when one told me I looked fine and therefore discredited everything I was trying to tell him. I cried, but then went home and managed to find an awsome set of doctors who actually care About getting me well. Thanks for giving me the courage to stand up and fight for my health. You rock girl!

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    1. Hi Jerusha! Your comment made my day! Thank you so much for taking the time to read, and comment on my blog such uplifting words! I am so glad my experience could bring you some strength. I hope you have found an awesome team willing to take your issues seriously girl! You sound like one awesome fighter. Keep in touch and let me know how your Lupron goes! Hugs.

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  5. Oh God Chanel !! I'm reading about the testing where you're strapped down for 3 hours... I couldn't even finish reading yet without reaching out to you!!!! You're amazing ❤... 🙆😚. Gonna finish reading now

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  6. Omg, I finished reading your post. It's impossible to imagine the brutality you've endured. Your will to live is unparalleled. What it made me think of is POWs. Prisoners of War. You're being held against your will by the enemy. Tortured, beaten and bruised. Long periods of isolation, and being starved. You have no idea if you will ever be rescued, yet you endure. You endure. Dare I say hope...

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  7. Hello. I just want to share with you that my father was diagnosed with Scleroderma when I was 6 months old way back in 1969. It is exceedingly rare in men. At that time, doctors gave him 3-5 years to live as the disease had already begun to attack his internal organs. What I want you to know is Scleroderma is unpredictable and the doctors are not always right! My father died from esophageal cancer 26 years later. Yes, the cancer was related to Scleroderma because Scleroderma had impacted the function of his esophageal sphincter, and that in turn caused acid reflux which led to cancer, but my point is, his disease took a turn for the better and he lived until I was 26. No one knew why, but that is the mystery of the disease. Back then, there were no treatments for Scleroderma. He had sympathectemies (cutting of the nerves below his arm pits), but that is the only treatment I can remember. He also took nephedipine to help relax his blood vessels and improve blood flow to his extremities. I wish you all the luck and strength. I also hope, like my father, that your disease takes a turn and you long outlive the prognosis. It can happen and I wanted you to know that.

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    1. Thank you so much for sharing your families experience! I am so sorry for the loss of your father. I have faced much the same issues as your father it sounds like, having both the esophageal issues with the lower sphincter, and having endured sympathectomies as well. It is always reassuring to learn about other patients battles, especially when they are positive. I too hope to outlive my prognosis! Thank you again for reading, and taking the time to comment.

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    2. You are welcome. I bet you will long outlive it. Stay positive and believe.

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  8. Our daughter has dealt with autoimmune issues since she was very young, starting with arthritis, adding raynauds, osteoporosis, clotting issues etc along the way, and then being dx'd with lupus when she was 12. She did 6 months of cytoxan for cns issues related to lupus. It worked amazingly well for her and was worth every bit of the treatment and queasiness etc. The shots were pretty horrible...gotta agree with you there! Our daughter used a cold cap during the cytoxan part of treatment and it really reduced hair loss. Or something worked at least. Her hair thinned, but not in a point and stare way at all. And honestly, while the couple of days around treatment involved way too much nausea, some vomiting, and general exhaustion, it wasn't anywhere close to as bad as we expected. Getting up to go to the bathroom nonstop because of the fluid is wearing. She uses a feeding tube and sometimes a wheelchair so we know first hand about getting tangled in lines etc. We are a couple of years out from it and I can say without hesitation that we would do it again if needed but we wouldn't be as nervous and frightened the second time around. I get it, really. We cleaned, and planned, and prepared in every way imaginable. Possibly things you wouldn't imagine. :). Then it was a bit anticlimactic as day 10 labs stayed low but ok, and she still felt reasonable the rest of the month. I hope you get the same amazing results and the treatment goes as smoothly as it did for us. If you want to know anything else from a "been there, done that" perspective, let us know!

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    1. Hello! I am so so glad you found my blog and shared your experience! It is always good to hear from patients that had a good experience with Cytoxan! Your daughter sounds like an amazing young woman. Such a fighter! I would love to stay in contact through out my treatment! :) Hugs!

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  9. I just found my way to your blog tonight and wanted to leave you with some words of encouragement. I love your spirit and determination to fight your disease. You are very courageous. God bless you and your family. Best wishes.

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  10. Hi, I hope you are feeling a little better....I too am just getting ready to do some chemo, I have two auto immune conditions , one that is attacking my blood vessels ...making it very dangerous. I saw what you wrote about lupron, which I am checking out...I am reading some of the comments at the bottom, of an article,( http://www.lawyersandsettlements.com/articles/drugs-medical/drug-side-effects-medical-device-companies-dangerous-2-13725.html#.VintUn6rTIU ) and I am not so sure about this med...did you have any chance to do some research ? As I am on a drug to shut down my reproductive system I think this is one drug I can miss...if lupron gets to be to much ask about megestrol ...it also shuts down your system while you are on it, and its a pill , every day...just in case this works better for you if lupron doesn't work...take care..hugs. My email is lja@shaw.ca

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    1. Hello Lisa! Thank you so much for the information! I will definitely be discontinuing the Lupron and looking into other options. Good luck during your chemo as well! Hugs!

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  11. Hope you're doing okay Chanel... I'm sending warm and happy vibes your way :)) Hope you're having some good moments with your baby and hubby. Having a snuggly lil booger to cuddle with, and keep you warm can help take the edge off of a really hard day.... having a hubby is nice too ;) LOL

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  12. Lol I literally pop all my joints out of socket. I am a 16 year old girl with a condition called Ehlers-Danlos Syndrome, Adrenal Insufficiency, and a Genetic Mutation. It has caused me to have my right shoulder dislocated for over a year now(18 months) and my left shoulder dislocates over 60 times a day. Then my other joints such as my ribs,fingers, toes,knees, wrists, hips and SI joint all dislocated for another added total of 90+ times a day. It also has caused me severe pain, scoliosis,skin issues, stomach issues, and heart rate/BP issues. I am on 16 medications right now for my issues. So I really understand the pain you are feeeling. Pain meds have improved my quality of life significantly

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