I feel like I have been in a perpetual haze since I started chemo; I am never fully conscious.  It’s oddly unpleasant, but certainly not earth-shattering.  Time seems to progress in fits and starts for me, rather than in its formerly orderly, linear fashion.  I apologize for not updating this blog more often.  I simply have to wait for the haze to clear enough so that my thoughts can even form.

I saw Dr. L. again on October 13th, and it was an interesting appointment.  It turns out that my particular brand of lymphoma is very strange indeed.  Dr. L. had been speaking with a hematologist and a pathologist, both at Harvard.  They discussed my case at an International Hematology Society conference, and “no one knew what to do with it”.

It seems that morphologically, it looks like diffuse large B-cell lymphoma (DLBCL).  However, a Ki-67 proliferative index of greater than 95% points to Burkitt’s lymphoma (BL).  To complicate matters further, in 46.5% of the 200 nuclei studied, there was a myc trisomy, meaning there were three copies of the myc gene.  The weird thing is that in Burkitt’s, there is almost always a translocation of one kind or another on the myc gene.  I don’t have that translocation, but the trisomy 8 is very unusual, and again, points to BL.

The question was, do we treat this thing with the DLBCL protocol, or do we go to the Burkitt’s treatment?  The Burkitt’s treatment requires a 3 month hospitalization with multiple rounds of i.v. and intrathecal (directly into the spinal fluid) chemotherapy.  It sounds absolutely horrifying to me.  Ultimately, Dr. L. decided that the most important factor is the way my particular lymphoma is acting clinically.  It is absolutely not acting like Burkitt’s, so she decided to go with the DLBCL treatment — the one I had already started.  I am, naturally, thrilled with that decision.  Of course, there is still some uncertainty about whether we’re doing the right treatment, but we can’t know for sure.  Dr. L. is brilliant, and I would assume the other specialists she has spoken to are brilliant in their own right.  I believe we are doing the right thing, under the circumstances.  Only time will tell.  At least I have an interesting academic puzzle to ponder while I go through all this.  God knew that if I had to get cancer, I needed it to be interesting.

Also on October 13th, I had a picc (percutaneously inserted central catheter) line installed.  I’m very happy about this because it means that the nurses will have easy access to a vein even if I’m dehydrated.  No more bruising all over my hands and arms.  Yay!

The very next day, I started cycle 2 of my chemo.  Dr. L. put more precautions in place, and things went much, much better than the first time.  First, Dawn, my incredibly skilled chemo nurse, gave me the Rituximab very slowly.  That meant I had only a very small reaction, easily controlled with ventolin.  Then, Dr. L. had left orders for an additional i.v. antiemetic to be given just before I left the chemo unit.  (I was still there for almost 8 hours, but that’s okay.  It’s better than the alternative.)  Dr. L. also prescribed another oral antiemetic for me to take at home.  Additionally, she ordered a visiting nurse to assess me later in the evening, and she set things up for me to return to the chemo unit the next morning for more i.v. antiemetics and hydration.  This worked incredibly much better, and I am more than grateful.

All in all, things are going okay.  I still have fairly regular, unforeseen bumps in the road, but I am confident that when I see Dr. L. again, she will be able to prevent some of them from happening again.  The whole process involves a lot of problem-solving.  Fortunately, I have friends who give me good advice and a doctor with an excellent mind.  I don’t know what the future will hold, but I am confident that it will be interesting.  Thank you, dear friends, for holding my hand along the way.

Every once in awhile the niggling fear of the unknown makes its way to the front of my mind and causes a smallish case of nerves.  This morning I awoke feeling a bit apprehensive because Dr. L. has not called me with test results.  She told me that the bone marrow biopsy results would take about two weeks and that she would call me when she knew anything.  The last time I saw her, she didn’t yet have results from the gallium scan or the bone scan either.

Tuesday would have been two weeks for the bone marrow biopsy, and I haven’t heard anything.  I am hoping it is simply the case that Dr. L. has been wildly busy, or that the results have been delayed — not that Dr. L. is sick and away from work or that she has bad news for me and doesn’t want to tell me over the phone.  Rationally, I know that it is pointless to worry, that in all likelihood everything is fine and that even if the news isn’t great, worrying won’t change the outcome.  Still, in spite of my best efforts, that niggling doubt remains.

Whatever the reason for the delay, I am bound to learn something on Tuesday when I see Dr. L. once again.  Oddly, I am looking forward to Tuesday (because I hope to get answers), but dreading Wednesday (when I will begin my second chemo cycle).

The good news is that Monday is Thanksgiving here in Canada.  I am looking forward to a big, family get-together (a sure distraction from the niggling doubt).  I love this holiday, probably because there are so many blessings in my life.  If you are reading this blog, I’m guessing that you, too, enjoy a large number of blessings.  So, to plagiarize a popular “grace”, . . . for all that we receive each day, let us be truly thankful.

Amen.

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.