Not sure if anyone is reading anymore but just in case, here is the latest update:
Once again I have to start off with a thank you that feels wholly inadequate for the overwhelming amount of support I've been receiving. As with any endurance challenge (and believe me, I view chemotherapy as the ultimate in endurance challenges), more than the physical toll, it is the mental and emotional marathon that is proving to be the most taxing. But each time I start to feel weak or down I have found someone comes through in some way to pick me right back up. And really, it doesn't take much - the fact that I am still getting cards and flowers and packages in the mail is amazing but the emails, text messages and facebook notes each lift me up as well - not to mention all of the people who have been so willing to give me their time to sit with me when I'm at my worst, especially those people who braved the New York City heat wave this weekend to come to my apartment that I will admit is not convenient to anything. Thank you just doesn't seem to express my gratitude enough but at the moment that is all I can give you. Except, I guess I can also give you all a long overdue update as to how I am doing now that I am officially half-way through my treatments.
Half-way means a few things. First, it means I have four treatments behind me and my oncologist has promised me those four are the worst. Which leads to the second thing - half-way means a change in drugs. I was taking adriamycin and cytoxan together but next week I will switch to what I am told is a more mild dosage of taxol. Forgive me if I've written about this before but now that these two drugs are behind me I think I can write about the worst of it. I think. Adriamycin is sometimes referred to as the "red devil" and as I explained in prior updates it is Kool-Aid red and is administered by hand pushed syringe. From what I had read and what I was told, this is the chemo drug most people have the worst reaction to. I cannot attribute any specific side effects to it other than red urine (strange but as long as a side effect doesn't hurt, I really don't care). The cytoxan, however, has been my enemy. Knowing it is still in my system makes it difficult to even type it or think about it without a rush of this horrible cold wave I can't quite adequately describe through my sinuses and across my forehead. Cytoxan feels like I am receiving something horribly toxic into my bloodstream from the minute the IV drip starts. The last couple of treatments I was given some Tylenol before the drip started which helped. The distraction of having music therapy during the drip helped as well. But both times, the mind-numbing headache snuck up on me near the end. I also blame my post-chemo migraines on the cytoxan as well and am hoping that these will end now that I'm moving on to a new, more mild drug.
Finally, half-way means I am just a few days away from ending what could be a near record for me of longest time away from an airport. I have not flown since my last work trip in mid-April. Since work or personal travel never allows me to be grounded for more than about 4-6 weeks at a time, I'm really anxious to get out off the island of Manhattan for an extra long weekend. I'm flying to Boston Thursday morning and then heading to Maine and New Hampshire - don't ask me for the details because I have stayed out of the planning (uncharacteristic of me, I know) and simply asked for lobster, relaxation and pretty scenery. I am confident all of my requests and more will be met - especially since I was informed ice-cream is on the itinerary every night. I'm just hoping I will be up for some hiking because I'm itching for it.
Speaking of hiking, let me tell you about my second encounter with acupuncture. I realize those two things do not appear to have anything in common whatsoever but if you bear with me a bit I will make the connection. As I've indicated before, my treatments have started to follow a pattern where day 3 (day 1 being chemo) is really the roughest. Friday was day three and sure enough, despite the fact that I felt mostly fine on Thursday, I woke up extra early in the morning with a migraine. I managed to fight it off fairly early but the fatigue and nausea and on and off head aches lingered. At my prior (and first) acupcunture treatment I was advised to schedule an appointment on a day when I was experiencing side effects so the treatment would do the most good. So Friday at 2 pm was the appointed time. I managed to shower and get dressed and my afternoon volunteer hailed us a cab without much delay despite the sweltering, record-breaking heat wave that had engulfed the city. The acupuncturist office is located, inconveniently, at 20th and Broadway. An easy cab ride and, under normal circumstances, a not so difficult train ride but I was not venturing underground in my condition. Our cab ride was jerky and bouncy but we arrived a few minutes early and the office was clean and air conditioned so the wait was tolerable.
I really wanted acupuncture to work this time. I was ready to will all of the pain in my body away if all it took was for me to lie still in a quiet room for a while. Before we started I confessed my tensions to the acupuncturist and he gave me a brief chair massage to work out some of the stubborn knots in my shoulders and to help ease the tension in my head using acupressure points and massage. It helped. I then settled onto the table on my back with a pillow under my head and a bolster under my knees. The lights were very low, a fan was blowing cool air on me and a nature sound cd was playing - I had been unable to sleep since around 6 am and was hoping this would all help. After listening to my list of aches and pains, the acupuncturist put needles in my ears, my arms, my legs and foot. The one in my right arm sent a jolt of electricity shooting down my arm and the one in my left foot left me briefly with a throb of voltage which I asked about before I was left alone and was told it would settle down but it was "powerful" because it was connected to the liver. I stopped asking questions and consented to an eye pillow before I was left alone.
My first treatment I was unable to relax. I could not stop thinking about all the needles in my ears, forehead and appendages. I felt stiff and couldn't shake a headache and really was focused on the time. But this time I went into the process with a plan - visual meditation. As soon as I was left alone I drifted from one destination to the next in my head. As has been my solace before, the visuals I kept returning to were mountain tops more than relaxing beaches. I relived not just the triumphant of standing on a peak soaking in the view and feeling the cool mountain breeze, but also the challenge of getting to the top. The slow, plodding motion of sometimes having to force myself to put one more foot in front of the other to reach the top. I recalled the time my sister and I hiked Wayna Picchu to look down on the ruins of Machu Picchu. How at one point she said she couldn't continue so I finished alone but was absolutely thrilled when I saw her head appear at the top of the stairway to the first plateau. She overcame a fear of heights to get there and we will forever have the memory of that place together. I also went back to Yosemite again from last summer when during a break in the descent of one hike I was posing for a picture at the bottom of a steep and rocky incline that looked to be a short jag to the peak when my guide asked if I wanted to run up it. I grew up running up rocky mountainsides so there are few things I love more than trusting my feet and bolting up a slab of granite. I dropped my pack (and abandoned my camera) and ran after my guide. Last Friday, I recalled each step as well as the tightness in my chest as I gasped for air at the near 10,000 foot altitude mark. I thought about the physical pain that made the accomplishment that much sweeter once we finally made it to the peak (each time we thought we were there, another one appeared). But mountain tops weren't my only visual on Friday. I also returned to my last day kayaking around a tiny, untouched island in the Pacific Ocean in Panama called Coiba. I did not love kayaking. It did not seem to love me either but that last day (after 5 prior days!) I finally found my rhythm and as we returned from our last snorkel, the sun was setting to my left leaving the cliffside of the island dripping in green jungle to glow in oranges and pinks while a giant full moon rose between silhoutted island peaks to my right. I never fully drifted off to sleep but I was definitely more relaxed as I allowed my mind to replay these scenes in my head, one by one. By the end I felt relaxed and almost normal. It worked!
Unfortunately I did not time my treatment well. As most New Yorkers are aware, for reasons that are entirely lost on me, pretty much every cab in the city changes shift between 3:30 and 4:30 pm making that time frame almost impossible to ever hail a cab. I walked back out to the street at approximately 3:30 pm on Friday. The Friday of an overwhelming heatwave where the heat index soared to 115 degrees. I was not wearing contacts or glasses but was instead hiding behind sunglasses to protect my eyes against the glaring sun but that left me moving through a fuzzy world. My friend and I tried and tried to find a cab but were met with off duty signs at every turn. We finally boarded the cross-town bus on 23rd Street and deferred our cab hunt to 10th Avenue. The bus was air conditioned but the semi-crazy atmosphere of the oppressive heat seeped inside as the bus lurched and jerked along. Before too long we were deposited at 10th Avenue and greeted with gridlock in all directions. I sat at the bus stop bench and tried to return to the relaxed state I had briefly attained and ignore the sweltering chaos around me but I couldn't help but feel I was in some sort of apocalyptic movie scene where all of Manhattan was attempting to flee. I also marveled at how quickly New York City can flip and feel like the developing world with a slide of the temperature. The exhaust of the cars, the glare of the sun, the stickiness of everything combined with my nauseated state to make me feel like I was on the verge of being the crazy one to stand in the middle of the street and demand a cab because I have cancer!!! (and possibly insert a few explitives as well). Happily, my friend managed to get a cab before it came to that. Although the cab we got was not exactly a prize with no shocks or air conditioning to speak of and a driving style that focused on flooring the gas or slamming on the brakes to move just a few feet at a time. Tenth Avenue was a parking lot so he moved impatiently to the West Side Highway and tried to talk us into returning to 10th Ave when that was gridlock as well. My companion fanned me with her hat and I prayed I could make it home without throwing up. And miracle of all miracles, I survived the ride and eventually made it home - I think it took close to an hour altogether.
And that was the last time I was willing to venture out into the heat wave. For the rest of the weekend I remained holed up in my apartment under the full blast of my air conditioning which gratefully powered through. I skipped my walks and did my best to sleep and enjoy the company of my visitors. On Sunday I went to a yoga class in the gym in my building and tried to forgive myself for a disproportionate amount of time in child's pose and then returned to sleep away the rest of the day.
Today I am in the office and feeling closer to normal but still a bit run down. As I said at the beginning the mental endurance is proving to be the most difficult part. I miss my own energy. I miss feeling like myself. And recently, I've started to miss my hair. All along I have said the hair loss is the easiest part of this because there is no pain involved but as the process drags on it gets harder and harder to talk myself up into heading into the world bald. The next round of treatments will possibly cause me to lose my eyebrows and eyelashes and I'm dreading that more than I ever feared the loss of my hair. I guess the truth is that while I am half way, I cannot say that it has flown by. It has felt long and drawn out and I am just hoping the next four treatments will be the ones to fly by because I feel my courage and determination dip much more frequently as time goes on. My emotions are closer to the surface which means the goodness of others touches me more deeply but I am also more sensitive to setbacks and challenges.