Wednesday, June 15, 2011

hair loss and other musings

Of all the things I dread about chemotherapy, being bald is the least of them. I find myself almost excited about the opportunity to do something radical I never would do if I wasn't forced into it. Am I delusional? Unprepared? A little bit crazy? Maybe, but that is how I feel and from everything I have read, other women simply do not feel this way. At least, if they do, they don't write about it. Or I haven't found those women's stories. So here is how I feel right now. While I still have a full head of hair. I promise I will admit if this all changes once I am holding a chunk of hair in my hand and looking at my bald scalp in the mirror.

Books and websites and personal anecdotes passed from friend to friend to me all warn that hair loss can be the most traumatic part of chemotherapy. In fact, one of the very first questions I am asked when I tell someone I am in chemotherapy or that I was about to start chemo is "will you lose your hair?" There is generally a head tilt and genuine sympathy in the voice when this question is posed and I chalk that up to the asker's own fears about facing baldness.

Early in the process I had several people tell me about some person or another they knew rather remotely who went through chemo and never lost their hair. These stories were meant to be encouraging but hair loss doesn't hurt physically and doesn't seem nearly as traumatic to me as puking constantly, losing finger nails or having severe diaherrea alternated with constipation (to name a few of my fears). Plus, when it dawned on me that I might lose more than just the hair on my scalp, I started looking forward to a summer without waxing or shaving.

As early as that first weekend after the big C was dropped in my lap I started buying hats and scarves and planning for baldness because to me, chemo meant losing my hair. Not just because that is the stereotype I have seen on tv but because my oncologist told me - you will lose your hair. All of it. She wrote me a prescription for a wig and handed me some ridiculous pamphlets which I will share with you when I really need something to laugh about.

My next step was to cut off my long hair. I have since received so many compliments on my new look (not all of them cancer-related, pity compliments either) that I think this is a style I may happily return to when my hair comes back. Because guess what, it always comes back. It will grow back 2-3 months after chemo - possibly gray and curly or maybe initially very fuzzy, but that is just the last remnants of the damaged cells and once those grow out, back to normal I will go.

That may be the biggest reason I just can't get worked up about hair loss. It feels like the least tragic part of the whole cancer-chemotherapy situation because 1) it isn't painful; and 2) it goes back to normal in the end.

Besides, I never did anything remotely rebellious with my hair as a teenager or in college. I had long (very long), straight hair that I tried to color once and when I thought it looked purple (it didn't), I panicked and asked my mom to help me fix it. I was not self-assured enough or insecure enough (whichever of these extremes it takes) to pull off anything remotely crazy with my hair.

And truth be told, I regret that a tiny bit.

I have now been settled into the corporate, professional world of being a lawyer in New York City for the better part of a decade and that means conservative dress, conservative hair. There are blogs out there that would advise wearing a ponytail too high in that environment is unprofessional frowned upon. So why not seize this crazy opportunity to do something different? To do something a bit wild and rebellious with my hair before I get to do my best to rock the bald look? And in the process, why not have fun with it, embrace it and laugh about it?

On the day I was originally supposed to start chemotherapy, I declared a personal Pink Day and asked all my friends and family to wear pink to support me through my first treatment. Things didn't go quite as planned that day but before we knew about the detour I had my mom spray some pink streaks in my hair and I loved it! We went to a Broadway play that evening and sometimes I would forget I had these crazy pink streaks in my hair until I looked in a mirror and then I felt amazing! It just made me feel so brave in the face of adversity, like putting warpaint on my face as I prepared for battle.

This past weekend I confessed a strange fear to a friend - what if I don't lose my hair? I have been buying hat after hat after hat and scarf upon scarf. I even have a wig (her name is Brandi and I am sure you will all be meeting her later). But what if I have made all of these plans and I am the freak who keeps all her hair? What then? I keep thinking I should just start wearing the hats and scarves to transition to wearing them without hair but mostly I've been saving them - they are my chemo headgear and I will have plenty of opportunities to wear them once I'm bald. But again, what if I keep my hair? Does that happen?

Not with the drugs I'm taking it doesn't.

Sure, there is a chance my hair could just thin out over the course of the first four treatments but the drug I will have those last 4 treatments is crazy powerful and any remnants of hair will be blasted out. Pretty much from everwhere. But I don't want patches of hair - I want all or nothing. So my resolve is to shave it off at the first sign serious clumps coming out.

Yesterday in the shower I noticed an unusual amount of pubic hairs coming out. I inspected my head but didn't notice anything unusual. I have always been a heavy shedder and, if anything, it seemed I was experiencing less hair loss rather than more.

But this morning, it was undeniable. The shedding has begun in earnest.

Each time I run my hands through my hair I am rewarded with a number of strands. No clumps, just a few strands. My doctor told me it would starting falling out two weeks after my first treatment and would all be gone within the month. I am 12 days post-treatment and right on time.

Which means, it is time to start getting a little crazy with the hair dying. Yes, photos will follow. And don't worry, if I end up having an emotional break down when I shave it all off, I promise to confess that to you. If I don't, you can all continue to scratch your heads (as I do) over how oddly detached I am from the emotional side of cancer.

Friday, June 10, 2011

Outrunning Cancer

Earlier this week both my inspirational running friend, Amanda and my sister asked me if I had received this month's copy of Runner's World magazine. I had not yet checked my mail so I confessed it could be waiting there but I hadn't seen it yet. They told me this month is a special issue with the headline "Outrunning Cancer" on the cover. On Tuesday evening, after a discouraging day of napping after a short, slow, very difficult 1 mile run left me exhausted, I checked my mail and picked up my copy of the magazine. Inspirational is an understatement. The issue is full of stories of amazing athletes who did not let cancer prevent them from running and stories of how cancer and fundraising races came together. The personal stories and even the snippet quotes make me tear up. They also inspire me to run.

I'm a new runner. I ran my first race just two years ago after using a version of the Couch to 5K training plan as a guide. My sister was my inspiration, as was the urge to just spend more time being active outside a gym. My two-year history of running is a slow and bumpy one riddled with injuries and obstacles. But I have grown to love it. Running is something I was told I couldn't do because of problematic knees - I made some modifications and made it work anyway. I have asthma and terrible seasonal allergies - I worked with my pulminologist and have learned to run through it. In fact, running has strengthened my lungs and helped my asthma.

So cancer, is that going to be the thing to stop me? Not if I can help it.

I am one week post-chemo and I ran two miles this morning. That second mile sucked. But it sucked in the same way a second mile would suck if I had stopped running for a 8 weeks for no reason at all. I had to stop running during my fertility treatments which meant all the training I had been squeezing into my once chaotic schedule were all but wiped out. I had to skip the 10K I was looking to run in May for the second year in a row. And I had to give up the goal of running my first half-marathon in June. But to me, those are temporary bumps in the big picture.

My doctor told me I can run. My body reminds me to run. My friends and family encourage me to keep running. And one professor of gynecologic oncology quoted in Runner's World this month claims "Researchers have found that people who remain active during treatment - exercising when they feel good, resting when they feel bad - tolerate their treatment better than those who try to exercise every day or don't exercise at all."  Judith K. Wolf, M.D., University of Texas MD Anderson Cancer Center in Houston.

Next week is the Corporate Challenge fun run/walk in Central Park which my firm runs in every year. It was my first run two years ago and I am registered to run it again next Thursday. After today's run, I know it will be hard to push myself more than 3 miles but I also know that breaking it all into 1/2 mile segments with walk breaks and a slower pace makes it more manageable. And ultimately, I think the timing couldn't be better. I will be 13 days post-chemo treatment and I am optimistic I will be feeling even better than I do today.

As for other running goals, I have some.

I am co-captain of a relay team in September - the Red Rock Relay to Zion. My sister has volunteered to be my shadow/back-up runner. If I can run, she will pace me. If I can't run, she will run for me. If all goes as planned (and I recognize that is a big if), the race will fall the weekend before my last chemo treatment.

About a week later, the Susan G. Komen Race for the Cure comes to New York City. I have latched onto the pink cause with all my might these last few weeks and have devoured the unbelievably useful information contained on the Susan Komen website. Other resources have been informative and helpful but this one has been invaluable. I want to form a team and throw myself into fundraising for that particular race and will likely bring that up here some more once I get more organized. The Susan G. Komen Race for the Cure has raised $1.4 billion since it started in 1983 and let me tell you, a stage II breast cancer diagnosis in 1983 was a completely different animal than it is today thanks to all the research that has taken place since then.

In terms of an update on how I am doing 1 week after my first chemo treatment - I'm doing better than expected. Those first few days were challenging as I worried about all the terrible things that were going to happen to my body that never actually materialized. Last night I asked a friend who works in oncology if it is true that treatments can just keep getting worse and he told me to just stay positive and not worry about it. If I am doing well then I just need to focus on staying in tune with what is happening to my body and stop fearing the worse. He was so right. He gave me permission to stop preparing for misery and enjoy where I am at.

And where I am at is a pretty good place. I have stopped using an alarm clock and learned that my body needs 9 hours of sleep a night instead of my usual 7. And some days - like Tuesday - I will be struck with heavy fatigue and malaise and I need to just give myself a break and sleep if that is what I need. I was completely disinterested in food for several days but my appetite has returned to normal and I haven't experienced any noticable shift in taste or smell. My skin looks the same as always and I am wearing extra sunscreen daily but haven't noticed anything different.

Every morning as I shampoo my hair I wonder how many more days I will have that pleasure. If my doctor's calculations are correct, I get another week of hair before it starts falling out. I'm shaving it all off the first time I pull a clump out. No reason to let it shed and fall out in clumps for weeks like I'm molting. Besides, I'm more afraid of the day my eyelashes fall out than the hair on my head. Also, I have this deep fear that I will be bald, with no eyelashes or eyebrows but still need to wax my upper lip . . . how awful would that be?

Mostly I'm trying not to worry, focus on the positive and make fun plans with friends and family to enjoy my new found free time. My spirits are high and I owe that in a very diret way to the phenomenal support of family, friends and strangers on the internet :)

Sunday, June 05, 2011

I cried today. In public.

And not for the reason you might think. Well fine, yes, it was related to cancer and chemo but ultimately it was someone's reaction that made me cry.

*******************

I am now finishing up my second post-chemo day and I will tell you the hardest thing I have encountered so far is my own psyche. There is something incredibly unnerving about waiting for bad stuff to happen to you. I've read and re-read about all the possible side effects of chemotherapy and what to watch for and what to monitor and what are red-flag-call-the-doctor symptoms. So I feel like I am trapped in my head checking on each and every twinge questioning what might be happening.

Yesterday I woke up feeling fine - normal, even. I had an appointment at the hospital with the doctor on call to get an injection at 10 am and I decided I had plenty of time before that for a run. I put on my favorite pink tank top and black shorts, picked some good music and strapped my iphone to my arm and my knee brace to my knee and ran out the door. I didn't run hard or fast and by the time I was at my usual path on the river my chest was already tight. My spring allergies hit late this year so I couldn't be sure if this was pollen-induced asthma or chemo-related shortness of breath. So I took a couple of puffs from my inhaler I stuck in my shorts at the last minute (the inhaler I often forget, neglect or just purposefully leave behind) and I kept going. I didn't run far and I didn't run fast but I felt like I was doing something amazing by running the day after my first chemo treatment, even if it was only 1.3 miles. I walked up the long hill to the hospital, stopping at Duane Reade to buy a Gatorade first. In the now familiar hospital lobby I handed the pager number of the on-call oncologist over to the security guard as directed and waited. I finished my Gatorade and put on the light long-sleeve shirt I had tied to my waist and wondered why there were birds flitting around inside.

The oncologist appeared and introduced herself to me and greeted another patient of hers waiting with me. She apologized for the wait and asked us to follow her back up to the 11th floor infusion room, which was empty on a Saturday. We each took a seat while she went off to collect our injections and the man in the next chair made small talk with me which primarily consisted of him telling me I shouldn't be running. I told him my doctor okayed it as long as I didn't over do it but he figured his mistakes should be a warning to me and told me about how he was off loading boats or something or other after his first treatment and ended up in the hospital for four days. I thanked him for the advice and tried to steer the conversation in another direction but was saved by the doctor who returned with my injection first.

Just like the fertility injections, this shot was stuck in my belly. Quick and painless. I told the doctor I had read/heard that the side-effects can come on stronger after the injection and she confirmed but also indicated, once again, it is a different experience for everyone.

So I went home and did a little more light exercise/stretching at my gym before showering and waiting for the dreaded side effects.

I drank lots of water and questioned whether I was hungry or queasy or nauseous or bored. I believe I was mostly bored. And scared. I wanted to sleep and I wanted to do something and nothing all at once. I felt restless and listless at the same time. I wanted someone to call or come over except I didn't want to see or talk to anyone.

By mid-afternoon I realized what sounded best of all was some lo-mein noodles with steamed vegetables so I ordered them. I didn't eat very much but at least I was eating. Although I was afraid to eat because I was (am) afraid to throw up. I refrained from my usual spicy noodles and got the plain ones.

By the end of the day I was exhausted from the sheer focus of paying attention to my body. My legs ached (they seem to do that at the end of the day now for no reason) and the glands in my neck feel tender and possibly swollen and I think I might always have a headache on a permanent basis but nothing unmanageable. No fever - I checked incessantly throughout the day since that is the biggest red flag. 

I went to bed at 10:30 pm and I didn't get up until 11 am. And I was still tired.

That isn't like me. So I worried and waited for the dreaded second day after chemo parade of horribles to unfold.

I didn't want to get sucked into TV so I sat on my favorite orange egg chair with my feet propped on a blue stool and read. I played my Sunday morning classical playlist and drank glass after glass of water. First I continued reading "The Emperor of All Maladies" until my brain could no longer focus. Around noon I decided I had to shower and get dressed whether I left the house or not. Afterwards I even convinced myself to eat some more noodles. I returned to my chair and picked up a lighter book - "Beauty Pearls for Chemo Girls" by Marybeth Maida and Debbie Kiederer. It was great, to a point. The book is basically all about how to combat some of the uglier side effects of chemo. There are great tips and messages but after a while I felt like I was waiting for my skin to turn brittle, dry and sallow, for my hair, eye lashes and eye brows to fall off and my eyes may even turn yellow! To combat all of this I would need to throw out every beauty product I own and start from scratch and from here on out the only fabric I should allow to touch my skin should be cotton.

Time to put away the books and step out the front door. I feel fine.

One of the tips for managing pain and stress and fatigue in that book and on many websites and other books I have read and even from my own oncologist is massage. I was gifted some massage gift certificates to a fancy salon I have never been to which is closer to my office than my house. I considered calling there but it seemed like more effort and less likely they would have an immediate opening. Instead I called a spa I have been going to for years. A small, new agey type place I have loved. Just as I had hoped, they had an opening for 5:30 pm.

I put makeup on and left the house early so I could go for a walk in the unseasonably cool afternoon air. A block or two from my place my sister called so I walked and talked to her for a while and then sat in Central Park for a bit waiting for my appointment. It felt good to be outside but the crowds of tourists and other oblivious pedestrians outside made me feel fragile. Waiting for chemo side effects was reeking more havoc on my psyche than actually feeling sick.

Once I was buzzed into the spa and was walking up the steps to reception, I felt tension sliding away. The familiar but unidentifiable to me scent of the spa put me more at ease and made me grateful to be off the chaotic streets of Manhattan. I was disappointed to not be offered the berry tea I have grown to love but happy to be quickly whisked up to the massage room before I even had a chance to sit down.

As we walked in the room she asked if I had any health issues she should be aware of. I already had this part planned out in my head. After all, I told my stylist when she cut my hair off, I told the girl at the nail salon so I could buy my own manicure set, massage is touted as a complimentary treatment to chemotherapy so it would likewise be no big deal to tell this woman.

I was wrong.

As soon as I told her I was undergoing chemotherapy she told me she could not help me. I told her I have spoken with my oncologist about massage and she said it is fine - encouraged, even! This woman spoke to me like I was a child (although I am sure she is younger than I am) and explained that when she massages, she is moving the cells around and if she massages me while I'm getting chemotherapy, she would spread my cancer. I tried to dissuade her of this incredible notion by explaining to her that I am comfortable with the fact that my doctor and all my research has indicated massage is safe and encouraged but if she is not comfortable with it that is fine. Again, she went into her ridiculous speech about spreading my cancer.

We walked back into the hall and at the stairway I burst into tears. I tried to shoo her away as I explained how incredibly stressful this whole experience has been and that all I wanted was a way to relax. Then she told me "do not feel this way" and I was done. I told her I needed to be alone to compose myself and I walked back into the massage room and took large, deep breaths. I pulled my sunglasses out and tried to piece myself together enough to get out of there.

I expected her to still be waiting in the hall but she was gone. I walked down one flight of stairs to the reception area and she had pulled the guy from the front desk into the back hall where they were clearly discussing the whole ordeal. I waved goodbye and incredibly, I think I even said thank you.

I raced down the last flight of stairs to the street and called my sister in complete meltdown mode. I was devastated.

When the results of my breast biopsy came back positive and a doctor told me over the phone "It's cancer." I did not cry.

When I had to call my mother, my father, my siblings and friends I love like family and repeat over and over "I have breast cancer." I did not cry.

When I walked into the office of my mentor to tell her "I have cancer." I did not cry.

When the oncologist told me about that damn spot on my sternum - I did not cry.

Throughout this entire journey from diagnosis to the start of treatment I have felt incredibly lucky to be surrounded by supportive family and friends and work colleagues. People who understand and if they don't, they fake understanding. In almost all of the personal cancer stories I have been devouring these last few weeks I have been shocked by how many people have to wade through rude doctors, nurses, receptionists, obnoxious friends, etc. I have had none of that.

Until today.

I vented with my sister and walked to the river where I found an empty bench to sit on and watch the sun set over the water. I breathed in the cool air and we laughed at this woman's ignorance - and the fact that she missed out on my business. We even quoted the whole "big mistake - HUGE mistake!" line from Pretty Woman. Venting to my sister put my soul to rest and looking at the water smoothed over the other rough edges.

I hung up feeling better and finished the healing with Mumford & Sons playing in my ears as I flipped through a magazine.

I decided, for me, no more solitary weekends. I may not be debilitated by sickness at the moment but from here on out, I need people around me to save me from what is happening inside my head.

Saturday, June 04, 2011

First Day of Chemo

the t-shirt I chose to wear for my afternoon walk, a gift from a friend
Oh the nerves I had this morning. I tried to eat but the only thing I could convince myself to ingest before leaving the house at 8:30 am was a homemade iced soy chai latte. Oatmeal, cereal, even toast just seemed too much.

Chemo was not my fear, of course, it was the biopsy results I was dreading/anticipating.

My friend JooYun signed up as volunteer for day one and as our two other close friends commented - she is exactly the friend they would want with them in this situation. Calm, reassuring and completely in control of her emotions - good news or bad, she is a good friend to have at your side. I realized as I approached the hospital entrance that she was walking straight toward me. A good omen.

Once I signed in at the now familiar reception desk in the oncology ward and said good morning to one of the now familiar faces, I didn't sit very long before I was called back to get my vital signs checked. One of the nurses there attended to others as I dutifully waited my turn at the scale, weighed myself and took an empty seat. The man next to me snapped a photo of all his final blood pressure, heart rate and temperature as it beeped on the machine he was still attached to. I commented that was a good idea and he grunted. Something in me has been prompting me to keep track of these numbers myself and next time, I won't leave my phone in my purse with my friend. I'll bring it with me and snap a photo for later recording. As the nurse turned her attention to me she asked my weight as she strapped the blood pressure cuff on my arm and stuck a thermometer under my tongue and told me not to lie. After consulting my chart she turned back to scold me about the marked fluctuation. I reminded her this is normal for me and that a lot of it was influenced by my fertility treatments and now that I'm back on my period my temporary reprise from bloat is gone. She eyed me suspiciously and made her notes before turning to the sick people in the room - the elderly woman helped into a chair by her two visibly worried daughters, the extremely thin woman in a coat next to me with one of those scarves with suspiciously fake-looking bangs poking out the front like the ones in the hideous "Chemo-Savvy" pamphlet I was given a few weeks ago.

My turmoil was in the emotional category shoved down out of view as I cheerily thanked the nurse and took my chart to pay my $20 copay to billing with another smile. I then collected Joo and went to Exam Room 2 to wait for the news. We waited and waited and waited.

And waited.

We took turns in the bathroom without a sink attached to the room and I showed Joo where the secret garbage can is next to the sink by the exam table and then we waited some more.

Close to 10 I was told my doctor had an emergency and was on her way. Then I was told again she is close and they were going to have me wait in the infusion room . . . I tried not to read into the fact I was being escorted toward chemotherapy.

I met Marie Anne a nurse I presume I will become more acquainted with as the summer progresses. She was sweet and efficient and honest. I also met Jeanne (sp?) as she sang her way to my side brightening everyone around her with her snappy wit, quick smile and flaming red hair. I hope I see more of her.

Marie Anne hemmed and hawed over whether to get me set up with saline before the doctor arrived and while she was asking me more intake questions my oncologist rushed in apologizing for her delay - her father is in the hospital. Of course I understand. More than this, I understand the fear of having a father in peril.

Right off she told me the biopsy was negative but before I finished my initial cheer she said she is caution about this. When the radiologist performed the biopsy he accurately extracted cells from the "bone lesion" as it is termed in my chart and when he looked at the smear before sending it off to pathology he noted abnormal cells and discussed this with my doctor. She did not expect a negative result so she suggested rather than try another biopsy (thank you very much), she would talk with the pathologist personally to better understand the report and in the mean time, we will proceed with chemotherapy and just add radiation at the end as a precaution. For now - I am back to Stage II breast cancer, as one friend put it in a text this morning "Isn't it funny when the best news ever is that you have stage II breast cancer? Hallelujah!"

Hallelujah is right. Earlier this week I was introduced to the term "storming heaven" and let me tell you the advantage to amassing an eclectic, diverse group of friends - my posse has been storming heaven in multiple ways with prayers to Mormon, Catholic, Sikh, Hindu, Buddhist, Christian, Jewish and non-denominational deities as well as pleading with the great unknown forces of the universe. Believer or non, my family and friends have focused their influence on me and whether that force turned abnormal, cancerous looking cells benign, I will never know (and to be quite honest, if those cells were malignant I would never blame it on a lack of prayers) but once again, the force of the effort has raised me up.

That fear behind me, I was ready to move forward with chemotherapy. I was given a small handful of pills explained as anti-nausea and steroids I swallowed all at once. Marie Anne lecture me about drinking lots of water to help my veins and she didn't seem to believe me when I reassured her I am a dedicated water drinker. If you don't drink lots of water, let me tell you what will convince you - kidney stones. Oh, and headaches at the smallest hint of dehydration. I carry a water bottle with me almost always. I pee every hour, sometimes more. I like water. If you really want me to drink more of it, I will but that means I need to be practically tied to a bathroom because my kidneys work double-time.

The saline-solution was cold going into the IV and I realized next time I should put my hoodie on before the IV makes it impossible. I think it was close to 11 by the time all the forms had been signed and I was ready for my first real batch of cancer killing chemicals.

The first drug in today's 2-drug cocktail is called Adriamycin and it is described aptly as "an anti-cancer chemotherapy drug." Just what I need, right? In contrast to the IV bag of saline I had been receiving for the first 30 minutes or so, the Adriamycin was given to me by Marie Anne via syringe placed into my vein and diluted with the saline solution still running into the same line. The most startling thing about Adriamycin is that it is bright Kool-Aid red. It looks menacing. The nurse warned me that it will look exactly like that coming out through my urine so I shouldn't be startled (I was still startled).


Adriamycin - my first taste of chemo

I received two fat syringes of slowly injected cherry Kool-Aid and was left to absorb it all for a bit - and to take one of my frequent pee breaks (did I not warn her I drink a lot of water and now she was injecting all kinds of fluids!). Luckily I learned right away from Jeanne that my IV cart has a name - George - and that he is polite and while he does follow me to the restroom, he averts his eyes. Oh, but yes, my urine was red right away, if you must know (and sorry if you don't want to know, but you really should realize by now I'm kind of into the details).



The parade of horribles caused by Adriamycin include: pain at the site where the med is given, nausea or vomiting, low blood counts, mouth sores, hair loss, watery eyes, discoloration in urine (check!), darkening of nail beds and fertility problems. Happily I do not need to expect all of these side effects and 12 hours after the fact, I can't say anything has concretely manifested itself other than the red urine.

Next up - cyclophosphamide aka Cytoxan, classified as an "alkylating agent" this drug is also anti-cancer - yay! An interesting historical factoid about alkylating agent, did you know mustard gas derivatives fall into this same category? A devastating attack on American ships during World War II floating in a harbor just outside Bari in southern Italy (a city my brother lived in where my sister and I visited him 11 summers ago, coincidentally) on December 2, 1943 resulted in the explosion of seventy tons of mustard gas stockpiled on one of the ships. The German raid was far more terrifying and successful than anticipated and nearly a thousand men and women died of complications over the next months. However, the incident resulted in the discovery that the gas specifically targeted bone marrow cells, a key scientific advancement in the early wild frontiers of chemotherapy discovery.

Chemotherapy drugs work (hopefully!) because they kill cells that are rapidly dividing. The normal cells will grow back and healthy but in the meantime, side effects occur (blood cells, cells in the mouth, stomach and bowel and hair follicles are similarly fast growing cells that are impacted the most). The ability of chemotherapy to kill cancer cells depends on its ability to halt cell division - the faster the cells are dividing, the more likely it is that chemotherapy will kill the cells, causing the tumor to shrink - or induce cell suicide.

Marie Anne warned me that this particular drug could cause an immediate nasal congestion or head ache. I told her everything gives me a head ache so that is the most likely outcome. Sure enough, not long after the IV was started, a sinus-like, mild head ache moved across my forehead with stuffiness to follow. The Cytoxan was briefly halted so it would go away. It stayed with me but we eventually restarted anyway since it had mostly subsided.

Aside from the technical portion and the anxiety, I have to say it was a positive experience. I had a nice big corner recliner next to the window in the infusion room. The woman in the chair closest to me offered encouraging sentiments, especially after I indicated this was my first time. I tried to be very patient when Quincy the therapy dog spent a significant amount of time with her as his owner chatted away. I had to ask not to be ignored and was granted some lap time with the small Yorkie-Poo with his own calling card. My brief time with him only intensified my growing desire to have my own dog. A hole in my life I endure in New York but which has been augmented by my diagnosis.
meeting Quincy, the therapy dog



 Later, while Joo was searching for some lunch for us, a reflexologist offered me a hand massage. I agreed to it and listened to her story. Jeanne told me I will do great bald because I have a beautiful face but when I thanked her she quickly told me she would not be saying it again and not to let it go to my head. I managed to eat half a tuna sandwich and drank my blessedly hot chai latte.

And after many hours at the hospital, close to 2 pm, I walked into the startlingly hot and bright sunshine of mid-day. I hugged Joo a couple of times and thanked her profusely and walked home wondering when I would start feeling rotten.

I made some phone calls, returned emails and texts and tried to focus on something, anything. Failing, I listened to Yo Yo Ma play Bach's unaccompanied cello suites and let the music bring me the comfort of Sundays at home, reminding me, as it always does of my cellist father.

trying to relax - I look tired but couldn't sleep
 Soon, a distraction arrived at my front door. My friend Katharine came over to keep me company, talk, sit, or leave me alone - whatever I chose. I chose chatting and then a walk - with food! We walked along my running route on the Hudson River and had an early dinner at a cafe on the pier I've wanted to try for a couple of years. It was surreal and perfect all at once. I managed to eat half a veggie burger and most of my fries and all of my blueberry lemonade. We walked back to my place and she gifted me a number of fabulous books and left me to them as she made her way home to her family confirming her offer to take care of my insurance claims. An offer even stubborn me cannot refuse.


dinner at the pier - highlight!
Around 9:30 I felt a twinge of queasiness and real or imagined I decided to break out the pills because that was what my doctor and nurse recommended. I am tired now. Overly tired. But I could not go to bed without capturing the day while it was fresh, while I am still well. I cannot say good night without thanking each of you one last time for "storming heaven" for me in whatever way works for you. As one who struggles with formal personal prayer, I am humbled by the ready gift of it from others.
beautiful city sunset out my window

Thursday, June 02, 2011

waiting

My jumbled up, unedited thoughts this evening at the end of a long week of waiting on biopsy results written as an update to friends and family and copied directly here.

This last week has been a long one. It is jarring to switch from a week filled with daily tests and scans to one of simply waiting. But once again I must thank each of you for enduring the wait with me. No, it isn't quite over yet. I do not know the results of the bone biopsy since, as expected, I will have to wait for the appointment with my oncologist tomorrow. However, I have endured this week and made peace with myself in terms of being ready for the results with the help of this community standing behind me, beside me and with me as I absorb the possibilities and contemplate my choices. Whether you are one who has reached out by text, email, phone call or card or simply by carrying me in your heart, I am buoyed by you. A lesson I feel I will learn over and over as you help me fight my cancer, I believe, is that a shared burden is a lighter burden. . . sometimes even to the point of forgetting it is there.

After the initial shock of last week's news that my relatively mild initial diagnosis of stage II breast cancer could be upgraded to the alarming diagnosis of stage IV metastatic breast cancer, I forced myself to push reactionary thoughts of death and dying to the back of my mind. I was assisted in this effort initially by a visit from my brother and his 8-month old daughter, as I mentioned in my last update. Other distractions presented themselves via dinner invitations, phone calls, shared meals and another Broadway show.

But for me, nothing quells fear like knowledge. In between welcome distractions, I researched and studied and asked questions of people with experience. I now have a better understanding of metastatic cancer and treatment options. I understand that metastatic cancer is a chronic condition that can be treated and attended to but not necessarily cured (thus, the minuscule 5% chance of it being eradicated by chemotherapy). I have questions ready for my oncologist and I feel more prepared to make a decision on how I want to proceed.

That being said, last night the stress of the wait manifested itself through excessive fatigue and headache. I went to bed without setting an alarm and endured a restless night and could not bring myself to leave the confinement of my home. I needed restoration, the kind of restoration that, for me, comes from solitude. I spent the morning continuing to devour the book "The Emperor of All Maladies" by Siddhartha Mukherjee, a biography of cancer. Reading the books helps me feel like I am somehow helping myself - again, research and knowledge, regardless of the actual information gained, is a comfort. The oppressive humidity that has hung over Manhattan these last few days was blown away so I ventured out for a mid-day 2-mile run along the Hudson River with the wind at my back on my way out making me feeling fast and then at my head on my return leaving me somewhat discouraged. The run, however, helped solidify some decisions that had been percolating.

A friend had called just before I left and as I explained to her how I questioned whether I should dive in and proceed tomorrow with chemotherapy or if the biopsy is positive, should I be more deliberate and seek a second opinion. Second opinions are supposed to be reassuring. They are used to confirm a course of action or to offer alternative views and possibly, in my case, a third or fourth option for treatment than the two I am currently facing. But the small steps I have made in that direction over the last few days have struck me in the gut. I have an oncologist I trust. She spends a significant amount of time explaining everything to me. She has emphasized that she is the person I should call with my questions (and I have) and she is accessible. She levels with me. She gives me facts, explains the gray areas and levels with me when I ask a question that is outside her understanding. She follows up. Not to mention her excellent credentials. All of that matters.

But that isn't why I do not want to take the time to seek a second opinion. What gives rise to waves of panic is the idea of further delay. Since April 18th, the day my lump was first detected, I have had this sense of urgency propelling me forward from one appointment to the next. And I have been incredibly fortunate in how quickly doors have opened for me, appointments made, results and consultations given. I have read accounts online of this process stretching out for months for others similarly situated. At each step in this process I have felt confident in those doctors, nurses, techs and assistants who I have encountered. I still feel that way.

Throughout my life I have made decisions through research, careful analysis of facts, meditation and in the end an indescribable propulsion toward an answer that cannot necessarily be called a decision but is more action. These decisions can appear impulsive to an outside view and may not always be the "right" choice, but the action itself is always a relief. I do not fair well during interim decision periods where "wait and see" is the only course of action. Therefore, unless I am kicked in an entirely different direction by my subconscious in the next 12 hours (a phenomenon that has happened), I have decided to take action regardless of the biopsy results and move forward with aggressive treatment as soon as possible - hopefully starting chemotherapy tomorrow.

Lest you believe my own impatient nature is causing me to cast reason aside, the other outstanding factor tipping the balance is my emotional state. As many have noted, I have managed to stay positive and upbeat throughout this process. This is not a front. I have faked positivity in the face of crushing challenges in the past, but not now. Right now I am afraid of the worst case scenario coming to life but similarly to that long week endured waiting for the results of my breast biopsy a month ago, I feel powerful. I have endured hard things. I have conquered difficulties. I am inspired by others who have done the same and I feel as difficult as the months ahead may be, I am more ready now than I have ever been. I have family and friends who are praying for me, thinking about me, reaching out to me - ready to help carry whatever piece of this burden I am willing to give away.

But for me, if I have nothing to direct this fight and grit and attitude towards, I will feel defeated. Every time I think of choosing the second option given by my oncologist - taking Tamoxifin to control or shrink any metastatic growth - I feel my resolve slip. It feels passive and slightly defeatist. At my age and with all the armor I have gathered to endure the coming battles, I cannot fathom reducing the fight to a pill and giving up even the slim 5% odds of success. Depression would surely follow.

I will send an update as soon as possible after I get my biopsy results. Thanks again for your continued support and for reading my somewhat jumbled thought process this evening.
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