I have been slow in updating my beloved blog because I still do not have internet in my new apartment thanks to the incompetency of Cox Communications as a whole. For a service with “communication” in the title, it does not seem as if they are very good at that part. Needless to say, I’m still living in colonial times. I have re-watched almost every DVD I own and read a lot (not a bad thing at all).
Last Thursday I took the day off from work and headed to MGH in Boston for preliminary testing for the trial. It seems like I’m a good fit for this experimental drug but they need to get baseline readings in a few different areas to be sure. I took the commuter rail in and went by myself (pauses- bracing myself to get pelted by the garbage of angry friends and family). I am silly. I should have just let someone come with me but I thought I would be in and out of there in 2-3 hours. It seemed foolish to have a friend take off a day of work for something like that. It turned out to be an entire day’s process of being poked and prodded. I should have brought a friend at the very least to gossip with in between tests.
The first part of the day was meeting with Dr. Birrer. He was very personable, knowledgeable and had a good sense a humor. Having a good sense of humor is a key factor for me. My nervous inclination is to crack jokes; I need someone to keep up with me. The research team was also a nice crew of women with whom I think I will get along well. Dr. Birrer elaborated on the science behind the drug, risks and benefits. He explained that this drug is different than traditional chemo because it is a much more targeted therapy. With traditional chemo, it basically targets every rapidly reproducing cell in your body hence why your hair falls out with Taxol. This therapy is targeting very specific molecules so hopefully this means that I will tolerate it a little better.
After meeting with the doctor I had five vials of blood taken from my chest port. I always remark on how weird life becomes after cancer because seemingly unpleasant situations can be perceived as good news. Example: 5 vials of blood were taken from my chest port. In normal world the thought of a half inch needle plunging into your flesh a few inches below your color bone to suck out your blood sounds pretty damn awful. In cancer life this is always good news. Nothing is more obnoxious than going through the trouble of getting a port to realize that phlebotomists and some nurses are not qualified to access a port. Then they need to dig around my tiny veins until they find something that works and this usually ends up being in my hand. Needless to say I was borderline giddy when the nurse was about to access my port.
After the blood draw I had an EKG which was quick and uninvolved. Then I was sent a few blocks away to an eye doctor for an ungodly amount of testing. This is where my patience really started to taper off. I read eye charts, identified colors, stared into blinding lights, did a peripheral vision test, and had a glaucoma test. Now this glaucoma test wasn’t the usual sucky puff of air. The way they conducted this test was BULLSHIT and I hated every second of it. They first NUMBED your eyeballs with eye drops. If you haven’t had this done before, it feels extremely weird and certainly unnatural. You can still see but your eye lids feel really heavy. Then the eye doctor goes “just look forward, this will only take a second”. Then all of the sudden what looked like a giant ball point pen was coming straight toward my pupil. Naturally I looked away. If my eyes could talk they would say “DANGER! DANGER! FLEE!.” After a serious internal pep –talk I allowed this giant ball point pen looking tool to TOUCH my pupil as I looked straight at it. I had the same feeling of fear that I would likely have staring down the barrel of a gun. I have to say, that was worse than the anticipation of the air puff. I feel that the optometry field is really going backward on this one. I think they are developing this technology just to mess with us. It’s a sick joke.
I did speak a little bit with the optometrist about the implications of MEK inhibitors on one’s vision. It is a legitimate and serious concern. There is a single case documented of retinal vein occlusion in a different MEK study. This means that there is a blood clot in the eye that prevents blood from feeding to the retina. Nerve cells in the retina can die which can result in loss of vision. This has only happened once and there may be other complications that lead to this but it must be disclosed to the patient (me) nonetheless. More commonly, patients experience little pockets of fluid that build behind the retina causing blurred vision. The optometrist said that typically the protocol is to stop taking the medication temporarily and in a week’s time it corrects itself. This happens in “most patients” according to the optometrist but I will have this battery of eye tests about once a month so they will monitor any changes in the eye carefully. All in all this battery of tests took 2 hours.
A critical piece of information that I was not prepared for was that my pupils would be dilated. I left the eye doctor basically blind. Thank goodness I took the train and not my car! My eyes were insanely sensitive to the light and anything up close would not focus. This made finding my way back to the hospital on my own and selecting a lunch option nothing short of an “adventure”. At this point my nerves were shot so I did what any rational adult would do. I sat down on the ground in front of the hospital, called my parents, and cried. I specifically said to them “I know this will be funny tomorrow but right now it sucks”.
The last stretch of the day was the Echocardiogram. I was supposed to have this at 1pm but because the eye exam took far longer than the research coordinator had planned for we had to reschedule it for later in the day. They echocardiogram was finally performed at 4pm, a half after the rescheduled appointment. It was annoying to wait so long but I got in, the technician was lovely, and that’s all that matters. I was on a train back home by 5pm and home by 6:30pm. LONG DAY.
In addition to these tests I was supposed to have a CT scan but the stars did not align and we were unable to fit it in so I had to have it in Providence the following morning before work. Sheila, my faithful friend and looker-upper of medical records, informed me that my CT scan results were stable. This means that there was no new growth. In fact, she said that the nodule near my diaphragm was a lot smaller than a few weeks ago! This is amazing considering that I am on NO medication or treatment regimen right now. I’ll choose to take it as a sign that things are starting to look up for me.
I begin the trial on May 23rd and promise to bring a friend or family member to the next appointment.
In other news I spent the last few days on the Cape with my parents and brother which was MUCH needed. Here are some highlights:
These people you see here have been through so much. So much more than any family should have to. Even though it’s not always easy for any of us, I hope they know how much their love and support means to me and how much I love them in return.
wishing you an easy go…praying for you. Kathy Lanza (Tony’s Mom)
Thank-you Kathy…. from Jessy’s Mom. Only you could really understand this journey. Thank-God Tony is doing well. We are so happy for you and your family!
Oh sweetie, wish i had been there with you. I will be in spirit on the 23rd. I have a photo of you and your parents near my desk now.
Jess you are an amazing woman & I feel honored to follow your blog. I think and pray for you & your family everyday.
You are a trooper! I think about you and pray for you every day. Your body is working hard already in conquering this cancer and the trial can only add to the arsenal. Hang in there.