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.


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'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


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 . . . .


Kelly S. said...

I think you rock bald. Love the picture of you from behind. I don't know if this is the right word, but it seemed so 'sexy'. And powerful. You are so Demi Moore in GI Jane when she shaves her head and beats up her instructor. Except you are beating up cancer.

Christy said...

I loved hearing about the support you receive when you tell people. The free cupcake & gift card re-affirms the goodness of people.

I admire your positive attitude and how much you seem to be enjoying life.

I am sure that by sharing your journey you are inspiring more people than you will ever know. I got that mammogram I was putting off because of you.

Lance said...

Thanks for sharing. Following closely and praying for your success and health!

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