"Hi, how are you?"  What do I say to that?

I love the train.  It's comfy and gives me uninterrupted time.  And, like today, I can run into old friends, colleagues, bosses.  I dashed for a good seat in the quiet car, one away from my current colleagues, where I could shut out the world for a bit, and work, read, and think en route to 24 hours of meetings.  In my dash, I saw two former colleagues -- not just any old colleagues -- but two of the top dogs, including one of the name partners who opened the doors of the healthcare boutique law firm where I worked from 1986-1998, a good long time.  I cut my teeth at that firm, learned strategy, policy, lobbying, the ways of Washington, and how to lunch at the Bombay Club.  Ah, the pre-austerity good old days!

I was delighted to see him, and he asked, as one does in normal conversation, "How are you?"  So, rather than saying, "fine," or "oh, ok, but I have stage 4 cancer," the following dialogue transpired:
Me:  "Good!  Just yesterday I started a blog.  I'll send you the link."
He:  "A blog?  Really?  What's it about?"  (He is even older than I am, so he does not expect everyone to blog, tweet, etc.)
Me: "cancerdiva4ever.com"
He:  "Oh..."
Me:  (interrupting) "But I'm going to be okay, really. I am."  (Note:  will write future post about comforting others when I share my cancer news.")
He:  "What are you taking?"
Me:  "Well, in the first round, I had T, A, & C.  Now I get C & G."
He:   "We worked on [getting FDA approval of] all of those.
Me:  "I know.  I remember."

Having worked in healthcare, on the regulatory aspects of various medications, including cancer drugs, certainly puts me in a different spot than most people.  So, yes, I know more than the average bear.  But when it comes down to it, I'm just another patient, with crazy stuff happening in my body, stuff that is not visible to the naked eye.  I look like everyone else (well, maybe better dressed and coiffed than most, but I pretty much fit into the crowd.)  There is no flashing warning sign.  So, when people I haven't seen for a few months ask, in normal polite conversation, "How are you," I am pretty damn open and honest, but really, that minor exchange does not generally warrant a detailed medical update.  But I also don't feel sincere saying, "Great?" So, I often go with, "I'm ok" or "Not bad, how are you?"  Some people are astute and pick up that something is a little off, and say, "Just okay?  What's up?"  Then I can spill the short version or long version or just refer them to my blog, which is a nice new option and shortcuts the conversation.  (Note to self:  Maybe I need business cards with my blog address on them, rather than writing it on scraps of paper.)

And then there was the guy I saw at the bar during our reception -- someone I see at these meetings -- and I said, "Hi, how are you?"  He replied, while gulping down a few peanuts, "Good, thanks," then walked away.  And that was all I needed to know.

Maybe possibly hopefully . . halfway through?

I have completed three cycles of chemotherapy.  Each cycle (not to be confused by a "round", of course) consists of:

• day 1: a chemo cocktail mix of 2 drugs, some anti-nausea meds, a bit of steroids, all infused through my port
• days 2-3, energy boost from steroids (as one BFF says, "Sandi on steroids is like . . . Sandi on steroids . . eg, on both phones, sipping a latte, while asking the waiter a detailed question about the menu, sending an email, talking to BFF, and refreshing my lip gloss
• days 2-6, some tummy aches, ward off with various OTC and prescription meds; whine a little bit
• day 8: one of the two chemo drugs infused again, with the same chasers
• day 9: a follow-up shot, subQ, to boost white blood cell count
• days 12-15: jolts of bone pain from activity of boosting white blood cell production in my bone marrow; seek to manage with OTC and prescription meds; whine a lot.
• days 16-20: live normal life, nothing special to report usually
• day 21= day 1, and we start all over again . . .

So, of course, I am very anxious to continue this regimen!  No kidding--I really am.

February 19, just about a week from now, will be a big day.  I am scheduled for a catscan.  No petscan this time, as apparently insurance providers prefer the specific feline scan to the more open-ended possibility of various household animals. 

On this red letter day, I will drink a contrast agent in the morning (that by then I will have picked up from Sibley hospital. I dont know if they offer different flavors or not; have not seen a menu of any sort.)   I am also allowed to eat and drink regular people food that day--I am SO delighted when a test is not a fasting one.   Im craving pancakes already!  After the scan at Sibley Hospital, I will meet with Dr. S to find out the results.  I'm really really glad I will be able to meet with him and discuss the results immediately--otherwise, I have no idea how I would sleep that night. (or frankly, how I sleep at night now . .  oh, I know how--not very well!)

So, essentially in a week-ish, I will know whether/how well the chemo is working.  Signs of less cancer, smaller spots of cancer, cancer being driven kicking and screaming from my body will all be very welcome.  And would mean continuing the lovely regimen listed above, for another three cycles.   Signs of more cancer, no change in the level of cancer, or other such nastiness will likely lead to a Plan B.  And no, I dont mean the morning after pill.  I guess there's also a possibility that the tests will be somewhat inconclusive.  As we know, so much of life is not black and white, and many decisions must be made in shades of grey.

All crossing of fingers, praying for healing, sending of good karma is much appreciated.

Stay tuned. 

A Shot in the Arm!

In the last week or so, I began to feel signs and symptoms of a lower red blood cell count.  Who but a non-chemo virgin would notice such a thing?? In the past, I may have just thought I was tired, or getting out of shape, or getting a cold or something . . .

The first indication was during a workout with Super-Trainer T.  We are close friends (I love this woman!) and so we talk the whole time during my once-a week-ish weight training session.  By we, I guess I mean, I talk the whole time--after all, a lot happens in a week! And there's only so much that even a Perfect Husband wants to hear.  But on this day, talking while lifting weights was not going so well.  In the few days that followed, I also noticed myself getting winded, even during power-shopping with my lovely daughter in Georgetown.  Power shopping does require energy and fous, but it is not exactly an extreme sport.  For some in my weekly boot camp workout class, my inability to talk and workout simulateously might be a benefit, but not for me.

Like the cancer nerd I am, I had saved all of my lab slips from 2010, and this year, so I made a chart.  Like the non-techie that I am, it is on paper with ink, not an excel spreadsheet.  But it very clearly shows the ups & downs of my white blood cells, hemoglobin, hematocrit, and platelets.  I knew enough to suspect the inability to power talk and power walk simulataneoulsy was not a Gerry Ford-type problem, but likely a drop in the hemos and hemas--i.e., my red blood cell count.

My next visit to Dr. S confirmed my suspicions with actual lab results--in fact showing that my blood counts now--after three cycles of treatment--are lower than they were at the very end of treatment in 2010.  The possibility of underlying anemia was ruled out, concluding it is chemo-related.  Again, that non-virgin chemo patient status rears its ugly head--feed me, feed me! 

In fact, Dr. S quickly decided to feed me with a supercharged biotech drug that boosts red blood cell production.  It is a subcutaneous shot indicated for use when red blood cell counts are lowered, within a certain range (and not to be confused with the other "shot" to boost white blood cell production.  Let's keep those colors sdtraight!  This is an appropriate use of this treatment--so hopefully I will regain the ability to walk, talk, workout, and power shop, in various combinations.  No, I will not be vying for a top finish in the Tour de France.  Just in case you were wondering. 

Flying to SanFran with My Cancer

Some thought I was crazy to be flying to SF a mere 17 hours post-chemo-- crazy, or perhaps impressive. (I don't think theyre inconsistent!)   It turned out to be neither, a rather hassle-free flight, with the worst part some slight tummy upset in the taxi ride to Dulles.  (Those taxi rides, even brief ones, can be challenging even to strong GI systems!).  I'm on Virgin America, which somewhat surprisingly let me board. "Have your ticket, miss?" "Yes." "Virgin?" "Um . . .  yes. "

My seatmate, a quiet woman sitting by the window, while I'm on the aisle, silently prayed before and during takeoff and landing, Buddist prayer.  Initially I did not want to invade her peaceful personal bubble, but we eventualy chatted, & she confirmed she is Buddhist, from Myanmar, practicing a very pure branch of Buddhism.  She encouraged me to meditate (one of my personal goals, one I have not quite gotten the rythm or hang of yet.)  She explained the simplicity of her faith: just 5 rules: don't kill;  don't lie; don't steal; don't engage in sexual misconduct; have sex outside of marriage; don't become intoxicated.   Wow, only half the number of the 10 Commandments, and 3 out of 5 seem quite easy!  I told her that last I could not agree to--she said that occssionally a little bit of wine is acceptable, for example, while one is shoveling snow(might work better for those of you in Chicago or Minnesota! DC, not so much).  Despite this disconnect, I was very comforted by her praying, in that if she was taken care of in a flight emergency, I might be covered also, just by my proximity to her.  Plus, she seemed so good and pure that I left all of my belongings on the empty middle seat when I went to the restroom.

It reminded me of a flight to Israel on El Al in the Winter of 2003, for the Jerusalem wedding of my oldest niece. If you've ever flown on a similar flight, you may have noticed religious Jews (mostly men), decked in dark garb, replete with prayer shawls, tzitzit, etc, davening (praying while swaying and slightly bowing), most often near the restrooms--apparently the only place to stand uninterupted.   My daughter, 8 years old at the time, whispered to me " Are they praying for themselves, or did the airline hire them to pray for everyone?" I thought that was a brilliant idea, and even moreso fueled by innocence.  She always was wise beyond her years.

Buddhist seatmate and i exchanged email addresses, and she promised to send me more wise thoughts and insight.  I gave her a fruit nut bar, as she seemed to have missed the Virgin food service.  She later ordered a Bloody Mary and gave me the 2 oz bottle of Bombay Sapphire, which was so sweet of her! I love flexibility in one's rules.

I will be in the Golden Gate City for a mere 25 hours, but am wondering if I can possibly leave my cancer there--  its a big state--and very progressive--maybe there's some sort of toxic waste dump that would take it? Or what if I claim my cancer needs its own seat, and then it doesn't have an ID or boarding pass? OK, lame ideas, perhaps.  But if Tony Bennett can leave his whole heart in San Francisco, why can't I drop off a few retroperitoneal lymph nodes??  It only seems fair.

For now, sending you all good karma, and best wishes for safe travels, wherever your path may take you.

 Sandi

Anyone know how to take a sick day?

Yesterday, I walked into a morning meeting at the office, half an hour late; threw down my coat & bags, and while searching for a pen, my large Kate Spade purse spilled onto the floor, leaving a trail of medicine bottles, yogurts, and lip gloss. ( I had not had time to eat, take all my meds, or properly fix my face before 10:30 am). I felt like Carrie Bradshaw on chemo.  I looked at my colleagues and said "if the garage guy gets shot, it will be my fault."  Several VPs had to step over my trail of personal items on their way to another meeting.  Fortunately, it was only an internal staff meeting, and fotunately I no longer get graded on behavior, like I did in school.  Yesterday afternoon, I told my colleagues that I was taking the day off today, as well as Saturday and Sunday.  I'd hate to become all-work, no play, making Sandi a dull girl.

So today, I am home, taking a sick day.  I'm not sure what that means, or really what to do. I'm not exactly debiliated: I can walk, breathe, and type, and don't have any doctor's appts. Although I might have a sore throat coming on. Maybe I should call someone about that.

And technology invades. I love love love my Ipad & Iphone, but they result in many many emails, and I cannot tune out all of the things that I should do, people I should reply to,  follow up with, etc.  Before blackberries & iphones, we just didnt know how much work was waiting for us.  Before catscans & petscans, MRIs, and tumor markers, we didn't know how much cancer was growing inside of us.  It is harder to rest, harder to stay innocent.

Today's page of my Latin American "Revelations" book has a poem:

This is not the first time
offshoot of humankind bearing firewood
whom you see raising up hope
from the ground.  You hope.
Hope, for you, can arise only from the earth.

Sending much hope and love to all of you,

Sandi

Later on Jan 25, 2013: Surprise!!

My lovely daughter drove home from college in NC for a surprise visit!

I cannot remember a happier moment than seeing her face and wrapping our arms around each other. 

Hope and love abound.

Chemo Cycle 2 & Realizing What's Important

I have completed 2 cycles of treatment since December 20: 4 chemo "sittings," 2 follow-up shots, numerous other visits with dentists, alternative healthcare providers, & non-oncologists.  No partridge in a pear tree.  Side effects have been relatively minimal & tolerable.  In cycle 1, I had a stomache ache for about 5 days--not debilitating, but annoying enough to keep me from wanting to work out or do very much at all.  Dr S thus prescribed "valium for the tummy." Yum.  This version of mother's little helper really worked for me.

In both cycles, I have had bone pain, a side effect of "the shot." The shot is a biotech drug that works to keep my white blood cell count up, as the chemo tries to pull it down.  It empowers my body to fend off infection. It works by activating cells in my bone marrow that produce those white blood cells.  In doing so, it can cause bone pain. I only experienced this once back in 2010, when I felt  a sense of little hammers beating away at my spine. I called Dr. S' office in distress, and they advised it was the expected bone pain.  (oh, sorry, I thought you meant achiness, not an all-out attack on my spine! ). It was managed just fine back then with OTC meds.  This time, the bone pain has not been just one battle, but a several day attack. As advised by the nurses, since I'm a second-timer, my white blood cell count was less hearty to begin with; so the shot is powering into my spine, ribs, breastbone, jaw.  One day it felt almost like labor pains, 10 minutes apart, 5 minutes apart . . . I eventually got something better for the pain, which I only needed to use once, as the bone jolts have subsided for now.

Other than that, it's been largely positive.  I've kept my hair thus far (more on that in another post); feel pretty good; am told I look good (and not just, "you look good for a cancer patient"). :). I was feeling strong and accomplished, and yes, I managed chemo on the same day I met with foreign government officials, including a delicious dinner & fabulous wine at Bourbon Steak in the Four Seasons Hotel in DC.  If you want to blow big bucks on an amazing dinner, go there! 5 stars!  So despite (or in between) the side effect annoyances, I have been quite happy, even euphoric at times.

Until this week.  I was swamped at work, and my schedule did not give me the opportunity to work from home (which I'm trying to do one day a week, to take the edge off). I had almost nonstop meetings;  have several business trips coming up to prepare for; and worked well into the evening 3 days in a row. On the second day, I put my head down on my desk during a conference call that led to a handful of new tasks. An hour later, I burst into tears reading the blog of  the sister of a neighborhood friend--the blogger is also a triple negative breast cancer patient It's fairly rare, and I don't know anyone else . . )  and she wrote poignantly about their mother's funeral.  It brought to light what is really important in life--I love what I do professionally, but when it comes down to it--what really matters? Memos and legislative strategies and legal analysis? Or sisters and mothers and relatives with illnesses, and loved ones coming together to celebrate the good times, and hold each other up in the tough times?

This is a question for which I think we all know the answer.