Monday, July 25, 2011

Acupuncture, Heat Waves, Half-Way and More

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.

Thursday, July 07, 2011

3 Down, 5 to Go

Once again I am taking the easy way out and re-posting the update I sent family and friends. Hoping to have more energy to blog during this cycle as I picked up yet another ridiculous pamphlet at the hospital to add to the crazy one I think will be appreciated as a blog post. Thanks for all of your encouraging comments, they help keep me positive.

Yesterday I felt like a pro at chemo. I knew what to expect and even had the opportunity in the waiting room to talk to a woman waiting for her first treatment and swap stories about running through chemo with an inspiring woman who is back for her second round of chemo with a recurrence of breast cancer (this time Stage IV but she had an amazing attitude and didn't start running until her second diagnosis!). I still feel like the youngest, healthiest person there as I have yet to meet or even see anyone who is under 40 and it can be a harsh reality to see how sick so many other patients are.

I continue to rebound well so that by the end of the second week post-chemo I feel pretty much normal. It definitely helps when friends continue to spoil me and my work colleagues continue to bolster me up when I make it into the office. I have learned that I still need more sleep than I usually allow myself and that naps and downtime are the best way to get me through the tasks and outings I prioritize. This return to normalcy makes chemo go more smoothly but causes me some anxiety leading up to treatment as I start to dread the return of queasiness, excessive fatigue, a lack of attitude and possibly migraines. It is hard to start over every two weeks but it is encouraging to know that I can work back to normal.

I was definitely carried through my last treatment with the support of my sister so I appreciate everyone who has volunteered to step up this cycle. I had a really difficult time after my sister left but managed to meet friends for brunch on the Saturday she left and the following Sunday. I also had another friend in town for most of the week who insisted on straightening up my apartment, taking me for short walks and reminding me when to eat. Some may say having a whole slew of lawyers as friends isn't ideal but when you need people to swoop in and wrest control from an overly independent type A personality, nothing is better than a lawyer, especially one with a lot of mom experience (oh, except for an actual mom and sister :)).

I didn't start running quite as early with the second round which I think worked out well. My first run after my second treatment I felt much stronger and wasn't as worn out so I managed to go further (farther? I can never tell which is appropriate). I've also continued some semblance of my normal workout routine with one or two days in the gym doing strength training and pilates and last Sunday I got very brave (with the help of a couple of friends) and went to my first yoga class in at least three years. I used to practice yoga at least once a week but once I fell out of the habit I let too many excuses get in the way to the point that I stopped entirely. I did much better than I expected and only fell on my head once (um, on my third attempt at crow pose, a very difficult arm balance which I have never successfully pulled off for more than 30 seconds at a time and I don't think that actually counts). I will definitely be prioritizing yoga classes from now on because it has always been healing and I think it is a practice I can ease into earlier than running post-treatment.

Last week was also a good work week. My primary work responsibility has been working with the summer associates by serving on our assignment committee. This is my fifth summer in this role and I have appreciated the support and encouragement I have received from not only the firm but also the summers and my other colleagues for being so comfortable with my bald head and even complimenting me on it! I usually manage to keep a scarf on for a few hours before it gets hot or itchy and then I just take it off and walk around freely and am returned with smiles and hugs. The hugs are the best. New York City isn't exactly known for its warmth and law firms even less so but I have really enjoyed the support and love and hugs I receive from so many of my colleagues - both those with whom I was previously close and those who have stepped up to a more supportive role now. It speaks to the basic good in people. Of course, all of the check-ins and support can make it difficult to actually get anything done when I'm in the office as the time just flies right by. But last week I managed to work on finalizing an objection with a junior associate and it felt really good to finish something concrete. Up until yesterday I still had myself convinced that I could fly to San Diego next week to argue the objection at the hearing. While I still believe I am capable of it, I am trying to remind myself of the best ways to expend my energy. Even if I detour home through Salt Lake (one of the enticements for making the cross-country trip), the flying alone will likely suck most of my energy, energy I would rather put into other endeavors. Plus, I think I want to save my cross-country flight energy for a trip to Salt Lake in August. I haven't booked yet and will keep those of you in Utah posted on when that happens (if it happens) because I will want to see those of you I can - a good use of energy.

This past weekend was one of my best. It started on Friday when I saw a FREE fan performance of the Tony award winning and top selling, most difficult to obtain ticket on Broadway - The Book of Mormon! A few weeks ago I tried to get lottery tickets with a friend and although neither of us won then, I received a call about a week later saying I was a winner for the fan performance! My brother had been trying to track down tickets for me and I chalk the good karmic win up to him for helping the universe grant my Make a Wish. I will preface my feelings on the show with this - it isn't for everyone. It was crude, irreverent and the language was extreme and shocking, not just for Mormons. But I was warned by many friends who had seen it previously about all of that and a few things they deemed may be most offensive. But I loved it. It was funny and at times sweet and with a few exceptions, they nailed some missionary stereotypes and I felt the overarching message was even if the baffling conception story isn't true, it gives hope and happiness to many people and makes them better people. At least that was my interpretation. Of course, I couldn't help but nitpick the flaws - placing the Missionary Training Center in Salt Lake, giving out mission callings and two year companions at the MTC. But the biggest gap was the "scary Mormon hell dream" theme. I think the writers missed what motivates Mormons - it is a carrot, not a stick. Mormons don't overachieve due to a fear of hell, they overachieve with the incentive of a better heaven. But that concept doesn't translate as easily into a funny song and dance number so I get why they resorted to fire and brimstone. Other concepts they did get right - some of the varied stereotypes of missionaries (some of whom I am pretty sure I have met!) and the cultural (but not religious) phenomenon of suppressing bad thoughts, feelings and doubts by just "turn[ing] it off", a great parody of surface level emotions commonly displayed in more casual relationships. The whole show had the feel of a dirtier rendition of a Mormon pageant (summer musicals put on at various church historical sites with no relation to beauty pageants), road shows (which I have first hand knowledge of from my lead role at 14-years old playing Suzy who falls down the food storage pantry alongside "Peter Pantry" with parodies of classic Mormon children's primary songs such as "Choose the Rice" (as opposed to "Choose the Right") which won me best actress) and finally the Young Ambassadors at BYU of whom I have no personal knowledge but my friend saw parallels. In the end, I wouldn't recommend it to everyone - no Mom, you would not enjoy it at all - but it was a really great way to kick off the long 4th of July weekend.

After the show I rushed home to grab my bag and rush back out to the bus station but was happily caught by my friend before leaving the house who encouraged me to wait for a later bus since traffic heading upstate was terrible. Recognizing that I would rather hang out at home for a couple more hours rather than spend that time sitting in traffic, I deferred my 6 pm bus ride to 8 pm which was a great decision. I made it to Rosendale, New York around 10 pm and was collected by my weekend hosts Ryan and Michelle who are determined to turn me into a bad house guest and who may regret their hospitality when I start showing up at their place every weekend. Saturday morning Michelle made some amazing pancakes and then I enjoyed an extremely hilly 2.3 mile mountain run in the neighborhood which left me panting more than usual and walking more than planned but I believe I still ran more than walked so I called it a win. I cooled down on their porch watching the chipmunks scurry about and listening to the breeze blow through the tall trees surrounding me. So relaxing. We later donned our swimming suits for an afternoon at a pool belonging to friends of my hosts' friends. I kept myself lathered in strong sunscreen and built my own shade under a giant sun hat as I'm supposed to be extra cautious under the sun's rays these days. I didn't actually swim but sitting on the steps of the pool was refreshing, as was the bucolic surroundings and the conversation. Back to the house for a nap while my gracious hosts once again let me be lazy and cooked dinner when we were joined by more friends of theirs whom I have met enough times I am now claiming them as my own friends as well. Sunday Michelle, the neighbor and I went to yoga where no one blinked at me as the bald girl since upstate has enough hippy vibe that I could just as well could be sporting the bald look for my own weirdness and not due to chemo. Some torrential rain foiled our hiking plans so we instead ventured off to Poughkeepsie for a movie and then late lunch/dinner in New Paltz where the waitress complimented me on my baldness (something I am not going to get tired of because I am too often caught off guard by it myself to be quite comfortable yet). More relaxing and too much ice cream and Monday mid-day Michelle and I set off to visit another friend's new house in the Jersey suburbs where we enjoyed snacks around the kitchen table and I tried to lure her Brooklyn raised, nature-adverse toddler onto the lawn to kick the soccer ball with me. He kept insisting on returning the ball to the familiar concrete. I wonder how long it will take before he appreciates suburban life.

I finished my 4th of July weekend with one more ice cream sundae indulgence sitting at my living room window watching the Macy's fireworks and catching up with my mom. Yes, I had corn on the cob, watermelon, pool time and country time, all enjoyed with good friends, I couldn't ask for a better weekend. Oh, sure I keep getting hung up on not being able to go on my annual river trip this summer but I compensated for that while at the mall in Poughkeepsie by purchasing new water-ready hiking shoes so I'll be ready next time I'm able to hit the white rapids.

As for yesterday's chemo session, the highlights are that it went by much faster than the last 5-hour session. Plus I learned Wednesday is a much livelier day in the infusion suite with the music therapists. I agreed to participate in a research study that involved a questionnaire which revealed to the good doctor conducting it that I feel strongly about most everything she asked and left my chemo buddy laughing much of the time - after all, who knows my strong willed personality more than the partner for whom I have worked almost exclusively for the last six years? She was great company and, as usual, kept me laughing enough that the nurse told us we were having too much fun in our little corner. As part of my music questionnaire I was asked my music background which always brings me a twinge of regret for not keeping any of it up. I revealed my dabblings in various instruments and to my complete shock I was later presented with a violin to play. Ummm, in case you aren't aware (most of you have no idea!), I "played" the violin briefly in 6th and 7th grade. I loved it and really wish I could still claim to be able to play but my skills were limited to holding it correctly (I was complimented on that) and managing to bow a nice long A on open string. I also managed to squeak out twinkle twinkle with some effort and helping with fingering. After that I strummed a guitar for a bit and found my place with some bongos while Lorraine played the wave drum as the therapist played along with us. It wasn't the greatest of music but it was a welcome distraction and I didn't get a headache with the cytoxin until there was only about 30 minutes left. A massive improvement from the last two treatments.

I spoke with my doctor about the migraines and feel a lot more empowered to address them if they come back but am hopeful I can avoid them this time around now that I have permission to caffeinate and I know what to watch for. I still anticipate I'll be sleeping a lot and appreciate the volunteers who have agreed to check up on me over the next few days.

Some more good news from the doctor is that the drug I will be on for my last four treatments will be more mild than those I've been taking which means I only have one more round with the adriomycin and cytoxin (the cytoxin is the one I blame for the headaches)!! I also have a fun long weekend planned in Maine and New Hampshire on the good weekend between treatments number 4 and 5 which will be a great way to celebrate the half-way mark. Please keep your fingers crossed for good weather and no thunderstorms the weekend of July 29th because I really want to get in a kayak and do some hiking. I don't think that is asking too much. My oncologist also reassured me that there is no way she will be adding extra treatments so I can continue to fixate on the countdown of 8 treatments spaced 2 weeks apart so I will finish up mid-September as planned. I will also be scheduled to meet with my breast surgeon sometime in August when I have only two treatments left so I can get my surgery on calendar. It will be approximately three weeks after my last treatment so my mom and sister can start scheduling their next visit for that time.

Which reminds me, if we have discussed you coming to visit for one of my treatments or any time, please let me know when you have definite dates so I can set them aside on the calendar and coordinate. The first weekend in August is reserved for my brother (possibly brothers) and I'm aiming for a SLC visit the second week in August between treatments but not booking that until I get a little closer. I also have the weekend after my last treatment in September tentatively booked so email or give me a call to sign up. I really do love having someone here during my down time even if I have to fight my hosting instinct.

Once again, thank you everyone for stepping up to help in so many ways. The cards and pictures and texts and emails are all so bolstering whether they come from far away or close. While it feels like April 28th was so far away, the time is really passing quickly and I owe so much of that to those of you who are willing to adjust your own schedules to reach out to me so often to - as my uncle repeats to me - shake your pom poms in this fight.

Friday, July 01, 2011

chemo #2, my birthday and baldness

First off, and most importantly, I have to admit that I resent the fact that I am bald and yet still have to shave my legs. Also, I miss my nose hairs. They aren't all gone, just most of them and I'm left with a constantly drippy nose and a fear of dribbly hangers on mortifying me without my knowledge.

Next, I want to apologize for the long silence. Among other factors, my sister was in town, it was my birthday and chemo number two hit me harder than anticipated. And then, once I'm feeling better I start running around trying to catch up and make up for the missed down time and I keep waiting for an opportunity to write all the posts I've been dreaming up in my head. Instead, I'm going to give you the update I sent friends and family and hope I manage to get better at blogging during chemo because there are so many interesting/funny/crazy/entertaining things happening I want to capture them.

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June 24, 2011

This post is a bit overdue considering how much has happened over the past week. For starters, I am now sporting a cool new summer hairstyle - a shaved head. By Friday morning I could not touch my hair without pulling out fistfuls of it. I wore one of my new silk scarves as a head band Friday to hide what I felt was conspicuously thinner hair - although my friends all reassured me I was the only one who noticed it. But I knew it was time for the hair to go. Besides, Thursday night I had a co-worker spray paint it all pink for the Corporate Challenge 3.5 mile run through Central Park and with fragile hair it was impossible to wash the pink out entirely so my scalp looked sickly.

Before I tell more about my wacky hair night I want to brag a little about the Corporate Challenge. Two years ago it was my first race. I had decided it was time for me to become a runner and in the spring of 2009 I dedicated myself to the couch to 5k program with the annual Corporate Challenge as my first race. I was nervous to debut my new runner self at a work event but it turned out to be the most welcoming of races since it is open to walkers and runners and everyone in between (I barely acknowledged myself as someone in between). The race is run in Central Park on a Thursday evening and can generally be counted on as the most humid or rainiest or some other extreme in weather. This year it was neither - it was perfect. I may have startled more than a few co-workers and summer associates when I returned to the lobby where everyone was gathering with bright pink hair and the following taped to my back: "Outrunning Cancer" and "Suck It Chemo". But it made me feel strong and empowered. Plus, it is much easier to tell people you have cancer when you are doing something strong and a little bit crazy (bright pink hair) than it is walking into their office and quietly shutting the door behind you. I never wanted my cancer to be a secret and my kind and gracious co-workers had been considerate enough not to gossip about me so the word had not really spread. Until the Corporate Challenge when I gave it a good kick in the pants.

People were amazing. They encouraged me and asked how they could help and a couple of people even took a streak of pink in their hair for me. One co-worker quietly decided to run the race with me. She did it in a way that was low-key. As we finally reached the starting line (20 minutes after the race started to give you some idea of how crowded this thing is and we were in the middle of the pack!) she started running at my side. I warned her that I have to keep my pace slow and that I take a short 60 second walk break every mile and she said fine, that works for her. She is 18 weeks pregnant so it probably appeared to the average onlooker who wasn't reading the sign on my back that I was slowing down for her and not the other way around but I knew the truth. I run alone so often it was nice to have someone to talk to and make the whole thing go by much faster. And near the end it was great to have someone motivating me to the finish line. We finished in 40 minutes. I actually think that isn't too far off my time from the first time I ran that race two years ago. It felt amazing.

But back to my hair. Friday night I decided all the hair had to go so at the last minute I managed to gather a few of my friends for some fun with scissors and clippers. At first everyone was a bit timid fearing they were somehow going to hurt me - I asked "when was the last time a hair cut hurt you?" and before long everyone was having a great time. There was pink and blue and gold glitter spray and of course they created a beautiful mohawk for me. It was so amazing we all wished I was going out somewhere to show it off! They tried to convince me to keep it for at least one day but the memory of that morning's shower with handfuls of hair kept me determined to be rid of it all in one swoop - with plenty of photos, of course.







By the end of the night I was left with a bald head. Mostly, at least. I tried to clean the patchiness up a bit the next morning but my scalp still had gold glitter and pink dye on it and it turns out shaving one's head evenly is not as easy as it might sound.

Saturday I covered up with a bandana and a large beach hat (and lots of sunscreen on my newly bald head) and attended an event in the suburbs with our summer associates. No one batted an eye as I felt my way through this new look of mine. I don't think the summers even cared when I took the bandana off for the car ride home (turns out being bald is much cooler than covering it all up!).

My sister arrived late Saturday night and has been here with me all week. She gave me another good shave on Sunday to even things out and I finally managed to scrub out all of the hair dye. I have a lot of strange squiggles of baldness but we decided that is just where the hair has fallen out permanently on its own and not random scars I wasn't aware of. Sunday was a beautiful day we spent wandering around the city shopping and getting me a new makeover to compensate for my lack of hair followed by a little photo shoot on my roof.

And Monday was chemo, round two.

Except before chemo, my sister and I went for a 3 mile run along the river - my run. It was a beautiful morning and happily not too hot, just a bit humid (or a lot humid if you are visiting from Utah). I ran most of the time with a hat but when it got too hot I took it off and we both wondered why people were staring . . . until we remembered it can't be every day that people see a bald woman running. I guess I was a bit of a spectacle. We had breakfast at a restaurant on the pier and had a leisurely morning until I realized we were going to be late to the hospital . . . oops!

On the good news side of things my oncologist told me she believes the tumor has already shrunk some since my first treatment. She asked me how I felt about that and I was a little startled. Of course I feel great because I didn't have any expectation that I would be able to notice any shrinkage that soon. I guess those nasty chemicals are doing their job.

Unfortunately chemo did not run quite as smoothly as it did on the first round. For starters, my veins have decided to turn on me and the nurse had to dig around in two separate veins before landing on a third that worked. One of the drugs I take in particular needs a perfectly functioning vein so maybe I was just lucky on that first go that the first vein she stuck worked. I'm going to try and steer the nurse to the good one on my next round.

Another problem with this round is it took forever. I was there five hours. Of course my sister was there with me but she was just as cold and bored as I was. Cold, you ask? Yes, it is freezing in there. I wear a hoodie and jeans. I also have zero attention span for anything so I think it is about time I stop packing 15 magazines and a book along with me. I did leaf through a couple of magazines but a book was out of the question. Perhaps for my next round I will try podcasts.

One of the reasons it took so long is the second medication I receive - cytoxin - gives me a pretty severe head ache - immediately. A head ache, it turns out, that lasts multiple days and eventually manifests itself in migraine form. The nurse slowed down the IV and gave me some Tylenol which basically just prolonged and slightly dulled the pain. Next time the nurse and I agreed we need to get some pain meds in the mix with my steroids and anti-nausea pills I pop before chemo starts.

Despite the relatively minor headache at the end of chemo, I decided to reward my sister for her long suffering in the freezing room on the hard chair (while I get a cushy recliner, visitors have a hard chair and are often asked to move this way or that by the nurses and staff) so we stopped at a tea shop near the hospital where I had the most delicious ginger iced tea. Ginger is one of my new best friends these days for its anti-nausea talents.

Tuesday I was tired but it was also my birthday and since I am part 5-year old when it comes to my birthday, I had a lot of excited energy. I don't necessarily have big expectations for my birthday but I love having it acknowledged and this year it felt acknowledged in a big way. I had the usual Facebook well wishers and more cards than I remember getting in a long time, texts and emails and phone calls stretched into the next day. Plus, I got flowers. Three separate bouquets of flowers. I loved them. I still love them!
I made sure to have a slow morning and we didn't actually leave the house until close to 2 pm when I had to be back at the hospital for an injection. The nurses all wished me happy birthday and sent me on my way in under an hour. Then it was time for pedicures after a stop at a favorite cafe for a smoothie. I'm a regular there and my favorite barista was startled by my new bald look and was amazingly supportive when I confessed to the reason for my baldness. When I told her it was my birthday she gave me a free cupcake and a gift card to the cafe convincing me even more that I put this all out there, I receive more support than I ever could have imagined back in return.

After pedicures we returned to my apartment for some down time keeping our fingers crossed that the predicted thunderstorms would not manifest themselves. I had invited a few local friends to join my sister and me at Shake Shack in Madison Square Park for an extremely casual birthday dinner. By 6 pm the sky was still blue despite weather.com's dismal predictions so I told my friends dinner was a go and Erin and I hopped in a cab. The line was long and the park was crowded but I had a great crew show up and we managed to pull together enough tables and chairs for everyone to have a seat. My stomach was still pretty stable and I managed to eat an entire 'shroom burger (which is far less healthy than its vegetarian nature might suggest since it is a portobello mushroom stuffed with cheese then fried!), a few fries and about half a milk shake. But even better than the food were the friends who came. I thoroughly enjoyed sitting outside with a variety of people I have managed to collect in my life over the years and meet some of their friends too. I just wish I had had more time with each person because the night went by far too quickly.

at the end of my birthday party at Shake Shack posing with another bald head
I won't dwell too much on the happenings of Wednesday and Thursday because that is when the chemo kicked in with full force. I felt terrible. The headaches were constant and while I wasn't sure it was a migraine while I was in the midst of it, now that I am feeling normal and separate from the whole experience I am pretty sure I had a migraine for two days. I've suffered from occasional migraines since I was a kid but this headache was so different from the ones I'm used to I was slow to label it as a migraine. I was so happy to have my sister here to urge me to eat small bits and encourage me to keep drinking water. The nausea was far more powerful than last time and even overcame me once. But only once. Wednesday I made it out for a walk along the river but yesterday was a dreary day and I felt even worse than the day before so I barely did much more than sleep. Reading, watching tv and even talking on the phone took more effort than I felt capable of exerting.

the Highline
But today - hooray for today (a week ago)! I feel almost normal! My energy is significantly better and the nausea is all but gone, just some slight queasiness and absolutely no headache whatsoever! To take advantage of my new found wellness my sister and I did a little touring along the High Line and then I took a break at my office while she explored MoMA (and yes, spending a couple of hours at my office was a break). And now I'm resting up for a farewell Italian dinner with my sister before she leaves me in the morning.



Rainbow World installation at the Highline - demonstrating how great I was feeling

*********
Today

Thanks again for all of your continued encouragement and support. I had some more low energy moments (okay, so I slept basically all day Tuesday) but I'm now at a point where I'm all but normal and wondering why I'm not getting more done. I am pretty much my own worst critic in this thing and reading about other people going through chemo is not always helpful because I tend to focus on all the things those people are doing that I am not rather than on what I might be accomplishing that they did not. Comparisons are bad. I need to keep reminding myself my body is going to react in its own unique way. And at least that unique way means I no longer have to shave my arm pits or worry about bikini waxes this summer . . . .
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