Saturday, June 16, 2012

Week One is Done...Fun Fun Fun

Howdy Y'all!

(I just realized that I am really getting used to my iPhone correcting the spelling of my words, which is making me lazy about typing some things correctly...for example...when I type "y'all" on my phone...I really just type "yall" and the iPhone adds the apostrophe. Ha.)

Anyway...I digress. Week one is done! Yay! I'd say it's been a rollercoaster, but it hasn't been too bad. For my HersheyPark friends, I would say it was more of a Trailblazer than a SkyRush. Monday, my bestie drove down from Pennsylvania and took me to my first chemotherapy session. She always makes things easier because she is the queen of distraction for me. She makes me laugh constantly and she provides comfort in a way no one else can. I guess she is the right blend of comic relief and serious caregiving for me and she knows how to make it all about me when I need it to be but in this natural unforced way...even when I am not all that gracious at the time. God, I love that girl! Guess that is what happens when you have been friends for 35 or 36 years (what are we up to now?). She also brings trashy magazines with her so we can dish on other people. 

So, Monday wasn't too bad with the help of a friend. I was still in a fair amount of pain and probably not the most pleasant person. I got my port all hooked up and they set me up in a comfy recliner chair, with a warm (as in they heated it up) blanket and a TV with probably about 80 channels (suh-weet). It took my bestie and I about 45 minutes to figure out how to turn it on and change the channels, but whatever...we got it going. 

Each day, they start off by giving me a benadryl and a zantac. This is to counteract the possibility of an allergic reaction and uh...heartburn, I guess, from the chemo drugs. I think it is to help with the effects of whatever it is they mix my ixebepilone with rather than the actual ixebepilone. After giving me the pills, I have to wait an hour for the full effect of these drugs to set in before they will give me my infusion. On Monday, the benadryl really affected me. Man, was I dopey and sleepy (at least 2 of the 7 dwarfs). Thank God for my recliner chair and blankie. Too bad for a very talkative nurse. Even my bestie, who is well-known for her ability to talk circles around anyone, was trying to quiet the nurse so I would sleep. I looked pathetic.

During my time there each day, I am able to order food free of charge. As much or as little as I want. We were kind of reluctant and scared, but I ended up ordering enough food on Monday for both myself and my bestie to eat lunch. Nice. The head nurse from my protocol team advised me to do this, but we still felt uncomfortable. Ha.

Tuesday was my rough day. I was really in a lot of pain and in addition to my normal pain, which is in my lower back, hips, and pelvic/abdominal area, I was having pain around my liver. The pain I was having around my liver was the same type of pain I had during and after my liver biopsies...only now I hadn't had anything traumatic happen to my liver, so I was FREAKED out, to say the least. The protocol team sent up one of their doctors to talk with me. I, tearfully, told him about my pain and my fears and he calmly explained to me that I have plenty of healthy liver in my body. He told me that where my tumor is, it may press against the membrane that surrounds the liver and that it is in a very sensitive spot. Otherwise it is a good spot because it is nowhere near any ducts and such and so it won't affect the functions of the liver by blocking an important duct, such as the bile duct. His thought was that it might be inflammed from the chemo hitting those cancer cells. I am not sure about that since it hurt a little before I started chemo on Monday, but we shall see.

They also sent a doctor from the pain management and palliative care department at NIH, who assessed all my pain and made some new recommendations. Everyone at NIH is so nice! Anyway, the biggest change he made was to add a drug called gabapentin for me to take at nighttime. Apparently, the pain I complain about in my abdomen and lower back sounds like nerve pain by the way I describe it. This drug is meant to calm down the nerves and thus reduce my pain...and you know works! Yesssss.

Soooo...I added this to my drug arsenal and by the very next morning, I was feeling great. Honestly, I don't know if it is the pain medicine that is working or the chemotherapy or all the prayers, but either way I am feeling much better. I am able to do a lot more and I feel pretty much like a normal human being again. I am pretty sure if it weren't for the port hanging out of my chest, you wouldn't know that I was sick. I even picked up a new hobby! It took me at least 3 weeks to do what most people probably do in one day, but look...I made this:

Anyway...Wednesday-Friday was uneventful. I have the routine down. I learned that some chairs on the ward are actually equipped with a heater and a massager and I have been asking for them daily. I love the chairs and I really don't want to leave when I am done infusing. I find myself telling the nurse..."take your time". Ha ha. My husband came with me on Friday, which was nice, even though he somehow convinced me to put soccer on the TV. Sigh. But, seriously, it was nice to have him by my side experiencing this along with me. He's a good egg. Today, I have to give myself the neulasta injection. I have had neulasta before (this is meant to boost my white blood cells) and I have given myself an injection before, but never these 2 together. I am a little nervous because neulasta is "thick" so you have to push it in slow or it really hurts, but let's hope this goes well. 

As I speak (or as I type), my husband is picking up my stepdaughter who will be living with us for most of the summer. I can feel myself switching into mothering mode and I am trying NOT to go full  tilt into that mode. Mothering is all about taking care of everyone else and I want to be sure I am still taking care of myself as well. It's not an easy balance, but I look forward to the challenge!

So, now I have 2 weeks "off" from infusions, even though I will be at NIH 3 out of 5 days next week. This will give my body a chance to process all the big bad cancer-killing stuff so that I am ready for round 2. I am hoping to continue tolerating this well and really hoping that it is working!

Thank you all again for all the praying and sending of positive healing thoughts. If nothing else, I FEEL much better, so I am extremely grateful for that! Mwah!!

Love, Vashni

Friday, June 8, 2012

Tenacious V

Last night, I went to my support group. I hadn't been going and apparently I needed to because I opened up some internal floodgates on my poor group. Boo hoo-ing. Sigh. It was kind of...cathartic. I feel better today.

During the meeting, the word "tenacity" kept coming up. Like the "word of the night". I'd been worried about not being optimistic enough, not being positive enough, not having enough hope and thinking that having negative, pessimistic feelings (even in very short passing intervals) would somehow prove to be a self-fulfilling prophecy and render me...well...a goner. I was reminded by the group that this is called "magical thinking". That just because I think I will be ok, doesn't mean I will be and just because I think this disease could kill me, doesn't mean it will. While I do believe whole-heartedly in the mind-body connection and I think that practicing positive visualizations and meditations can only benefit me, I have to remember that I can't really just cure myself by wishing hard enough and thinking only positive thoughts all the time. Likewise, a negative thought here and there isn't going to suddenly bring the anvil down on my life. 

What one member said to me...was don't have to be positive all the time, but you do have to be TENACIOUS. I decided to look this word up today...just to be sure. If I am going to be tenacious, I want to make sure that I doing it right! 
 1. Not readily letting go of, giving up, or separated from an object that one holds, a position, or a principle: "a tenacious grip".
2. Not easily dispelled or discouraged; persisting in existence or in a course of action: "a tenacious legend".
Some synonyms of tenacious: stubborn, obstinate, resolute, persistent, insistent, dogged, and determined.

Yes, yes and yes. I want to be all of those things. I am not giving up. I am not letting go of hope. I will stubbornly, doggedly, determinedly hold a tenacious grip on my life.

So, I picked a trial. Not everyone agrees with me, but I followed my heart. I made the decision for myself despite the naysayers, which is actually a pretty big deal, in and of itself, for me. Go me, Tenacious V!!

Next week, I will start the Ixempra (ixabepilone) trial. There are a number of reasons that I decided to try this one first, but I will spare you my rationalizations. Starting Monday, June 11th, I will be getting 5 days of infusions of ixabepilone. This drug is FDA-approved as a 2nd-line therapy for breast cancer, which means if the first drug used on a breast cancer patient doesn't work, then this is the next drug the doctor would try. This drug is similar to the drug Taxol, and has been found to work on patients who didn't respond well to Taxol (me). This is a Phase II study, which means that they have already tested it on a small group of people to determine a safe dosage level. Now they are testing it on a larger group of patients with cervical cancer to further evaluate its safety and effectiveness. 

From the Phase I and Phase II studies up to this point, they have found that 15% of patients have experienced tumor shrinkage. Not a huge number, but it's worth a shot. I am hoping to fall into that 15% range. This is a "safe" choice for me. It is similar to what I have already experienced and it will spare me major bodily trauma. My first follow-up scan will be 6 weeks in and if we find at that time that it isn't working, I will move onto the next trial. 

I did have a baseline CT scan this past Wednesday and while my pelvic mass(es) have remained the same size, my liver tumor has grown another centimeter. It is now up to 7cm. I have to keep reminding myself that it is centimeters and not inches. Kind of a big difference. Still, it's getting pretty big as far as liver tumors are concerned and I am not happy about that at all. I am starting to think I need to name that sucker so I know who I am working on killing. 

Anyway...having recently witnessed the power of pray in a friend's life, I would like to ask for prayers, prayers and more prayers...especially next week during the times the medicine is gushing into my body and heading for those cancer cells. I don't have my full schedule for the week yet, but I would especially appreciate prayers between noon and 3pm on Monday...I will be infused at some point during that time. If you aren't a praying person, but do believe in sending healing thoughts or energy or positive vibes, please do so. Light a candle, have a prayer circle, lift me up. (Gosh, I know this sounds so selfish...but I am just trying to rally the troops!) I know I am already on a lot of prayer lists at a lot of churches, and I super appreciate that. If I am not on your church's prayer list, please consider adding my name. You hereby have my permission. Besides being tenacious, I want to rally God's, the Universe's, the Divine's help in healing. Please pray with tenacity! I promise to return the favor to you whenever you need it!

Love to you all, Vashni 
(aka Tenacious V (ha!))