Friday, October 9, 2015

Houston, We have Liftoff! - Health Update

Term: Spoonie
Definition: A person living with chronic illness.
Origin: The Spoon Theory written by Christine Miserandino
About: The spoon theory is an analogy used by patients to describe their living experience when their illness results in a reduced amount of energy, compared to that of a healthy individual. Spoons are an unit of measurement used to track how much energy a person has in a day. In the event someone runs out of spoons they are unable to continue with their day. 
Example: "I am running low on spoons so we will have to reschedule."
               "I have to save spoons for tomorrow so I should stay in today."
               "She is a spoonie like us, suffering from disease or disability!"

I am sure some of my readers, and even family members have heard me mention my "spoons." I wanted to give you all the definition and origin behind my odd chronic illness lingo. The link is in pink above for you to read the Spoon Theory in its entirety. I adore this analogy, and so does my husband lol It is a tangible way for him to express to me when I have overdone it and am too stubborn to slow down! ;) It's a term you will hear often in our home as we even have a spoonie cat! Our little Apocalypse (yes that's his name) has multiple chronic illness so we often tell him "you ran out of spoons!" when he is tired and grumpy. Our week started out with our poor spoonie kitty at the vet actually! He was battling his mamma for most appointments of the week! (Three in total... so he didn't quite beat me this time haha) He is doing well and on the mend after some infections took a toll on his tiny little immune suppressed body. Here is a picture of him! I realized I have never posted a picture of my darling little Abyssinian kitty. 

He helps me write all my posts.

I had a total of four appointments this week, nothing to out of the ordinary, though I did get to catch up with my Rheumatologist after getting the devastating news that she did not want me to move forward with the chemotherapy I had been prescribed by my UCLA Scleroderma Specialist. I patiently awaited my appointment with her which was of course at the very end of the week! (Talk about being on pins and needles!) If you didn't catch my last post, this one may not make a lick of sense so feel free to go back and read "New Doctors & Diagnosis - Health Update'" to catch up on the Cytoxan fiasco! In a nut shell I was prescribed an aggressive chemotherapy in August which my insurance STILL hadn't approved by October. October came along and my Primary Rheumy (not my world renowned specialist that prescribed it) decides she wants to use another drug instead! Flash forward to the day after I receive that news: my insurance approval comes in the mail! I was approved for my Cytoxan Infusions to start immediately! (Houston, we have liftoff!) You can see the dilemma, and sheer disappointment. Right when I FINALLY received the great news that my new treatment was approved, I also get hit with the fact that my main Rheum may not agree with it! To save you the anticipation I had a meeting with her yesterday, a long two hour appointment where both myself, my husband, and her discussed my treatment options, and the reasons she has hesitancy to use this drug. We hashed out everyone opinions, and the other options that she was interested in: Actemra (an RA drug used to fight inflammation) and Cellcept (a chemotherapy in pill form used to suppress the immune system). I have previously been on Cellcept (twice actually) both times having a poor experience; while Actemra didn't seem to have any promising case studies when it come to lung fibrosis. While Cytoxan is very dangerous, it has incredible benefits for the lungs, skin, and even the GI tract! You cans see why I would want to experiment with Cytoxan even though it is a highly toxic drug. Its effects improve more organ function than the rest, it's the one that I have yet to try, and it is the strongest drug used to combat autoimmune disease. I feel confident that after the year of heightened progression I have endured that it is time to undergo this treatment and give my disease a real run for its money! 
The only draw back is that this is also the same drug used when a patient undergoes a Stem Cell Transplant. If you have reached toxicity to this drug you may lose your eligibility to preform the transplant, which my doctors absolutely believe is in my future. My compromise is that I will undergo the Cytoxan, which my UCLA doc prescribed, but for six month instead of a year, then reevaluate. That way I still have the potential for a transplant since I will have not reached toxicity by that time.
My Primary Rheum was pleased with this compromise and expressed that while she is in no way against using the Cytoxan, she will just hate to see me go through all the horrendous side effects of chemotherapy when there 'could possibly' be other options (though there is no guarantee those other options will work, and could set me back to where I am too sick to complete Cytoxan in the future). Hair loss, nausea, vomiting, bone pain, sterility, heightened infection risk, and sheer exhaustion will be the next six months of my life, if not more. Luckily since I am young there is a drug that can potentially protect my ovaries from the drug effects, though it's not a guarantee. It will put me into a state of induced menopause while I undergo treatment in the hope that one day I will be fertile. The drug is a once monthly butt injection. (Goodie... showing my bum to nurses is not my idea of a good time.) So if all goes as planned next week when I see my UCLA Scleroderma Specialist on the 15th we will be starting Cytoxan just before Halloween!

My other appointments this week consisted of a Pulmonary Function Test, a meeting with my Pulmonologist, and of course my weekly Saline infusion. My PFT stayed more of the same so nothing new to really report there. My Saline infusion however was a different story! I have something called an implanted Port (click for info/photos). This is a device embedded under the skin above the breast for patients who have difficult IV access, or need constant IV access. It is accessed by a hollow one inch needle pushed through the skin into the Ports reservoir. This is actually about ten times less painful than starting an IV I promise! As long as you can get passed the fact that a giant needle is coming at your heart area, you're good! lol ;) Well my port is a bit jumpy since I don't have much... um... "fat" in that area of my body. (small boob joke!) So if not anchored (held in place) properly my port will slide to the side when accessed resulting in a giant needle being plummeted into my chest cavity instead of the device. This hurts. A LOT! Well as you can guess the reason I am telling you this is because this happened. Twice. I was bloody and bruised and not a happy camper! I kept explaining to the nurse that she really had to grab it hard, but I could tell she was hesitant to hurt me from grabbing too tight! After the second miss we called down an Oncology nurse that was very familiar with ports to access me. She got it in one painless swoop! Woohoo! Needless to say I will be wearing high necked shirts for a while until my breast looks less beaten!

Notice the Spoon necklace! ;)

In other super awesome news I started writing for a new media outlet! XOJane is an online magazine for woman to be their "unabashed selves!" It's an outlet I have been following with posts written by woman from around the world and all different walks of life for a while, so when the opportunity arose to write for them I couldn't have been more excited! I was recently their cover feature in an article they titled: Why I Still Want To Look Beautiful, Even Though I Am Dying.
I had to giggle when I saw the edits they had made, especially the title. Not what I would have chosen, but hey, that's the life of a freelance writer! haha I'm just so honored to be part of the writing team! Next week I have a full day of Autonomic Testing, a Saline infusion, and an appointment with my Sclero Specialist from UCLA. I'll be sure to update everyone next Friday! 

2 comments:

  1. Hi Chanel
    I am glad to hear that you and your Rheumy worked together and came to a compromise about the Cytoxan that you both feel comfortable with. I wish you the best throughout your treatment and I hope that the only side effect will be better health! Congrats on your opportunity to write for XOJane!-Just another example of your extraordinary strength and determination to not let your illness control your life. :) My mom often reminds me, "You are not your body". I sometimes have a hard time remembering that, but now that I've heard your story I know the saying is true. You epitomize that saying because despite the toll scleroderma and lupus has taken on your body, YOU do not reflect sickness or disease. You are full of life, joy, and vitality. Thanks as always for being an inspiration by sharing your truth.

    Julie

    P.S. Apocalypse is a cutie! Hope he feels better!

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    1. Thank you Julie! What an incredibly sweet comment! :) Hugs!

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