Shock and Awe — I know this phrase was used by Rumsfeld et al. to describe their misguided campaign in Iraq.  However, in my life, the phrase has a much more positive meaning.

I am utterly shocked  and awed by the waves of love, kindness and generosity that continue to wash over me.

I don’t want to include people’s names in my blog, especially without asking them first, but I do have to mention my friends at Hyde Park School.  The gift basket and gift card they sent me are so enormous and so thoughtful that no one would believe it unless they saw it with their own eyes.  It is obvious how much thought and care went into this gift, as each item was chosen to make my trek through cancer territory more comfortable.  As I use each item, I am overcome with gratitude and love for these amazing people.

Along those lines, my darling friends from Calico Book Club have also outdone themselves.  As a result, I am now the proud owner of enough audiobooks to get me through all the rest of my chemo sessions.  Sweet!  I am busily transferring them to my ipod.  It’s so nice to have something to look forward to during my darkest hours.

There are so many individuals who are working hard to keep my spirits up and to ensure that I am comfortable and happy.  I won’t include your names, for privacy reasons, but please know that I am in awe of everything you are doing and that each act of kindness means more than you will ever know.   In a recent University of Chicago Alumni Newsletter, there was an article titled, “Social Isolation Worsens Cancer”.  I said to Terry, “We don’t have to worry about that!”  It is because of you, dear friends, that we don’t have to worry.  I can understand how easy it would be to feel blue when fighting cancer.  I don’t have the energy to get out of the house very much, and that could be very isolating.  Because of the extraordinary efforts of my extraordinary friends, I don’t feel isolated or blue in the least.  If I beat this thing, it is because of you.  You are there, holding my hand, both physically and metaphorically, every step of the way.

Shock and awe indeed, and most of all, love.

I started chemotherapy on Wednesday, September 23rd.  Dr. L. had performed the bone marrow biopsy the day before.  I have to say, that procedure was cake compared to the kidney biopsy I had a couple of years ago, and even that wasn’t all that bad.  I know how fortunate I am to be blessed with an extremely high pain threshold.  I also believe my nephrologist and Dr. L. are both exceedingly skillful, and that has to make a big difference.

At any rate, high pain threshold or not, the chemotherapy was horrific.  In the chemo unit, I had an immediate bad reaction to one of the drugs.  Three nurses came running, and they paged my oncologist and respiratory services.  They got that under control quickly and skillfully, but I ended up being at the clinic from 9:00 – 4:30.    At the end of the day, Dr. L. came to check on me again.  After she left, I said to Terry, in my rather groggy state, “I’m in love with my doctor. . .”

Then, we spent the night in the emergency department because after vomiting once per hour during the early evening, things picked up and I ended up vomiting every 15 minutes for 7 hours.  I broke blood vessels in my face and eyes, and had blood in my vomit.

The Day After Chemo

During each 15-minute cycle, I vomited, then had uncontrollable muscle spasms in my legs, then my breathing became faster as the nausea rose, until I vomited again.  I was sweating profusely throughout, and had elevated heart rate and blood pressure.  Thanks to the talented ER doc and nurses, the  vomiting was finally basically under control around 4:00 a.m.   Terry ended up teaching on 2 1/2 hours of sleep.  I am praying that Dr. L. will allow me to do my next treatment as an inpatient.  I cannot imagine going through that again if there are alternatives.

In addition, I don’t have a picc line yet (the first thing the ER nurse asked about), so when I woke up the next day, I had bruising and bandages on both hands, one wrist and the inside of both elbows.  They had trouble in the ER because I was so dehydrated my veins disappeared.  I also woke up with a very swollen face from all the broken blood vessels there.

Written September 20, 2009

I met my hematologist/medical oncologist Thursday morning.  Wow!  If I were cancer and I knew that she was going to be my foe, I would pack my bags and skedaddle post-haste.  (Let’s just hope my particular brand of lymphoma is equally sensible.)

Dr. L. is a force to be reckoned with, fighting mightily for her patients.  Don’t get me wrong — she is kind and patient and all the things you would hope for.  It’s just that she also radiates competence, intelligence and power.  She appears to have an over-abundance of energy and talent.  I feel like I have a super-hero in charge of my treatment.  How cool is that?!

Even before I met her, Dr. L. had referred me for this program, requested that test, etc.  She requested a myriad of tests to stage the cancer, get a base-line because one of the meds in my chemo regimen can be cardio-toxic, and generally get me ready to start chemo on Wednesday.

Unfortunately, all the various tests and scans are being done on an urgent basis.  That has led, rather precipitously, to the red tape blues.  It seems that while the cancer clinic is highly organized, some other parts of the hospital are not.  I have had appointment times moved with no notice, been sent on a wild goose chase all over the hospital when no one could figure out where I was supposed to be, been left in a waiting room for outrageously long because the receptionist neglected to enter my presence into the computer, etc., etc. ad nauseum.

To my knowledge, I have only one scan left, as well as the bone marrow biopsy that will be performed by Dr. L. herself.  I will be so happy to be done!  I am sure there will be tests and scans along the way to monitor my progress.  I am hoping the fact that they are not being requested urgently will make things a little more predictable.

Today’s title was brought to you by the British Ministry of Information.  Designed to be reassuring during uncertain times, it was the motto on posters created during World War II.  When I saw it on the front cover of a journal at Barnes & Noble, I knew that a) it was particularly appropriate to my current circumstances; and b) I had to have the journal.

I was supposed to receive my biopsy results last Tuesday, but because my surgeon’s staff leaves something to be desired, the results were not in my chart during my office visit.  Unfortunately, it was too late in the day to call the pathology department at that point.  I don’t know who was more upset — the naturally taciturn but obviously empathetic surgeon, or me.

Either way, the dear man called me around 9:00 the following morning — on 09/09/09.  Weird, but true.

And the results are . . .  drumroll please . . .  diffuse large B-cell lymphoma with a KI-67 proliferative index of more than 95%.  This is a very aggressive lymphoma with a less than stellar prognosis.

Since I received the news, my social calendar has been outrageously full of appointments.  Not only are there a myriad of doctors to see — the nephrologist I adore, my off-the-charts-amazing family doctor, the radiation oncologist, the hematologist — but there are also a raft of tests to be done and other preparations to make.  (I need a gallium scan, head-to-toe CT scans, a bone marrow biopsy, more blood work, and heaven only knows what else.)  In addition, I got my hair cut short so there will be less to clean up when I lose it.  I moved up my regular dental appointment so that my teeth will be sparkling and in good order before I start chemo.  I am trying to purchase or order anything I may need or want during chemo — lots of new pajamas, slippers, vitamin water, a mini lap desk I can carry with me, turbans for my bald head, etc.

Yesterday was my first visit  to the cancer clinic.  It was pretty stressful.  First, someone was supposed to call and ask me to come in 30 minutes later than originally scheduled.  Unfortunately, she dropped the ball, so I had to sit nervously in the waiting room.  Fortunately, I found a volunteer — a kind university student — and made him talk to me so that I could overcome my jitters.  Next, I met with the “primary nurse,” Kim.  She was great — funny, down-to-earth, knowledgeable and reassuring.  After that, I saw the radiation oncologist.  He was very nice and seemed extraordinarily knowledgeable.  When he didn’t have an answer, he told me so, but told me I should ask the hematologist when I see her on Thursday.  Unfortunately, at the end of the appointment, he explained that because of my lupus, and particularly because I have so many skin manifestations, we will not be able to use radiation to fight this thing.  Because this is such an aggressive cancer, I am disappointed to be losing one of our tools.  However, everything happens for a reason, and I am grateful to have such a knowledgeable radiation oncologist.

My astounding friends have already been incredibly supportive.  One friend has been over to start cleaning and organizing everything in my house.  Holy mackerel!  I should have had cancer a long time ago!! ( Actually, this friend is so astounding that she has offered to do this for me on many occasions.  It took cancer for me to accept — not for her to offer.)  Another friend is soldiering through the pain of reliving her mother’s recent cancer death so that she can prepare a gift of things I will need but don’t yet know about.  Yet another phenomenal woman stopped by my house with a card and gift ON HER WAY TO THE HOSPICE to visit her mother, who is dying of ovarian cancer.  I feel amazingly loved and well cared-for.  Most of all, I feel an overwhelming sense of gratitude.  If the love, kindness and generosity that are flowing my way can’t beat this cancer, nothing can.

And if all else fails, keep calm and carry on.

We’ve all heard that money makes the world go ’round, or that sex does, or even that love does.  Without a doubt, the thing that makes my world go around is friends.  I’ve mentioned elsewhere in this blog that I’ve had far more than my share of luck.  Well, the same can be said of friends.  There are people in my life who are so talented, intelligent, kind, loving, caring and generous that they leave an enormous impression on everyone they meet.  How I ended up knowing and loving so many of them is beyond me.  There’s that old saying about God not giving us more than we can handle.  Perhaps my compensation for all the health issues is that I have such extraordinary friends.  Whatever the reason, I am more grateful than I can ever express in mere words.

To my friends!

It is well accepted that power and money can propel a person pretty far in our society. What we don’t think about or talk about very much though, is the role of energy. Energy, stamina, drive — I used to have them in spades. I took them for granted. I was a scholar and a competitive athlete. I worked hard; burning the candle at both ends was my everyday modus operandi. It never occurred to me that my energy and stamina could one day come to an end.

Particularly in North America, even those born without money and power can get ahead if they possess intelligence and drive. I, for instance, grew up in a lower middle class family. There is no question that I have had more than my share of luck (a.k.a. kismet, fate, the hand of God). Still, without energy, drive and supreme confidence in my stamina, I would not have attained the amazing experiences and comforts that have formed my thoroughly enjoyable and rewarding life.

These days, my energy is at low ebb, a condition I find extraordinarily frustrating. Of course, I have a cold; I recently had surgery, causing the lupus to flare; and I may very well have lymphoma. I understand the reasons for my lack of energy, but they don’t make the fatigue more palatable. I am hoping for an early respite from the haze of exhaustion. Until that happens though, I will simply have to put my feet up, eat too much chocolate and bore you with my blog. 🙂

One week ago, on August 24th, I had an excisional biopsy of two enlarged & deformed lymph nodes in my neck.  I am hoping to learn pathology results at my follow-up appointment on September 8th.

Biopsy Scar

The outpouring of love, kindness and support from our phenomenal friends during the past week has been nothing short of astounding.

No matter what battles lie ahead, it is clear that I am truly blessed.