Tuesday we went back to the cancer center after only three weeks in order to see how I was doing on the new regimen of two weeks on the Votrient, one week off.  In the interim, there had been one slight scare.  I hadn't had much pep (or "many peps," as one of my French friends used to say), so a week ago Monday, we had decided to out for dinner.  By 7:30, I was ready to go.  "Are you ok?" Mohamed asked.  I said yes; he said no, as blood was running out of my nose.  The 1350 morning shots that Mohamed has given me over the last 3½ years are Lovanox, a strong blood thinner.  It obviously was working, as it took an hour for the nose bleed to stop.  Mohamed left to get take-out, and I ate well, but by 9:30 the bleeding had begun again, and we couldn't get it to stop.  Big, stringy, gross globs of blood ran non-stop down my throat.  Although it seemed silly to go to the ER for a nose bleed, by 11:30, when it was still bleeding, we decided to go.  We spent two hours there.  The doctor cauterized an artery in my nose, but I didn't have to have the inflatable balloon they sometimes have to use.  Since then, there haven't been further problems, though yesterday we had a humidifier installed on the furnace.

Tuesday the blood work went smoothly, and there were no new problems.  During the three weeks of the new schedule, the G-I problems had improved, and my blood pressure was relatively normal.  The new regimen, however, meant that I was taking 1/3 the dosage of Votrient as I had taken when all this began.  Mohamed was worried about the diminution, so during the consultation, we proposed increasing the dose by going to three weeks on, then one week off.  So rather than this being a week without chemo, I'm still taking it.  Next week will be the week off.  As long as the three-week regimen doesn't have more serious side effects, we'll stay on it until the end of January when we have our next series of tests, including the CT scans.

Happy Hanukkah, Merry Christmas, and a happy New Year that brings all of you health, prosperity, and joy.

It's been almost a month since I posted anything, a month when I went back on the Votrient.  At first, the resumption of side effects was very gradual.  But by now they've all returned.  First to make a comeback was the loss of ability to taste and the accompanying loss of appetite.  Before I was in the hospital in October, I had never had a sandwich from Jimmy John's.  Mohamed brought me one (a #12), and, off the Votrient, I thought it was the most delicious food I'd ever eaten outside of France.  As long as I wasn't taking the chemo, I scarfed down at least two of them a week.  And then suddenly, once back on the Votrient, the sandwich lost its taste, and finishing one seemed an ordeal.

We'd cut the blood pressure meds down to two, rather than the three we'd been using to counter the effects of the chemo, which raises blood pressure dramatically.  (One of the causes of the hospitalization last month was that while I had stopped the Votrient, I forgot to reduce the blood pressure meds, so I was reading 80/40 when I entered the hospital.)  But now the blood pressure was high again--not dangerously so, but consistently above what is desirable. 

The last symptom to return was the diarrhea.  It took a while, but when it returned, it did so with a vengeance.  Imodium is back on my regular rotation of meds. 

Yesterday we went to the KU Cancer Center.  Usually we go every six weeks, but to check more closely, we went after four weeks.  Blood work went quickly, but there was an uncharacteristic wait for Jennifer, the physician assistant we see on every other visit.  There were the usual anomalies in the blood work, but most of the discussion concerned the chemo schedule.  What we've settled on now to help alleviate the consequences of Votrient is a schedule of two weeks on, one week off.  I started the week off yesterday.  We're going to try one blood pressure med while I'm off the chemo, and we'll go back in three weeks after the first of this new cycle.  Meanwhile, I hope the diarrhea abates and my appetite returns, especially in time for Thanksgiving dinner.

Since the last post, the Royals have lost the last game of the World Series, though what a thrilling post-season they gave us.

The election has passed and gloom reigns supreme.

The Supreme Court has legalized same-sex marriage in Kansas, though our dreadful governor, secretary of state, and attorney general are doing everything they can to create hassles, e.g. forbidding the DMV to allow changes in a driver's name after a marriage.  Presumably, we'll be able to file the same federal and state income tax forms this year.

Happy Thanksgiving.  We'll be spending it among friends, the same group as for the last three years, though in a different location.  I'm making a pumpkin cheesecake, which is always delicious, though I'm ashamed to admit it's a Paula Deen recipe.

And since it's a Thanksgiving tradition to say what one is thankful for, I'll jump the gun and say that I'm most thankful for Mohamed, who is unfailingly loving and caring and who, after four years of this, has never once complained.

our good news day

Yesterday was our long day of tests and decisions at the KU Cancer Center.  Normally, after all these visits, Mohamed and I are rather blasé about these days, but I'll have to admit that this time, after the full month's break in chemo, we were both a little apprehensive.  We were up at the crack of 6 a.m. and out the door an hour later.  It was still dark when we left, which meant that driving into the rising sun wasn't fun for Mohamed, especially in the morning KC rush hour traffic.

The first stop is drawing blood and putting in an IV, which I need for the part of the scans with "contrast."  I had an unfamiliar phlebotomist, a woman named Ted.  Her real name, she said, was Edwina, but she'd early chosen to go by Ted.  She was efficient and chatty and said that I was "fun" and "a tough old bird."  Fun--not so much these days; tough old bird, a phrase I've been known to apply to myself.

Next we descended to the basement, where I changed into hospital pants, which promptly fell down the first time I walked down the hall with them, removed my shoes and shirt, and began drinking the two large, cold cups of water.  Rather quickly, I was called for the x-rays--19 of them in all from head to toe.  The technician was impressed with the size of my titanium femur.  Then there seemed to be a long wait for my turn in the CT scanner.  Because of the heat the various machines in that part of the center generate, the temperature is kept very low.  I always shiver, despite the warm blanket they give me.  The scans went quickly, and shortly before 11 we were done.

We met our friend TJ at Stroud's, home of the world's best pan-fried chicken, to say nothing of their cinnamon rolls.  The restaurant has been featured several times on the Food Network.  For years, the only location was in North Kansas City--an old house mobbed on weekends. Some time ago, they opened a branch near the cancer center, and since my appetite was still good, I figured I should take advantage.  TJ sings with and is marketing director for KC's gay chorus, the Heartland Men's Chorus.  They're part of the T-Mobile commercial montage of "Take Me Out to the Ballgame," which runs right after the "God Bless America" seventh inning stretch during the World Series.  Since no food is begun before the order is placed, we had a nice, long time to chat, and TJ is always an entertaining conversationalist.

At one o'clock we were back at the center, ready for our consultation.  And the results were all good.  Despite the month's respite, the primary tumor hadn't grown at all, not one millimeter.  What a relief!  We ruled out switching to another chemo treatment: why start all over again with no specific idea of the side effects of the new drug or of its efficacy?  Dr. Van asked if we wanted to try another month without chemo, but both Mohamed and I had already decided that we weren't ready to push our luck, so last night, for the first time in a month, I swallowed two pills of Votrient.  Hello, old friends.  One of the immediate side effects is that Votrient raises blood pressure, and so for the past three years, I've been taking three anti-hypertension meds.  We'll go with just two meds for the moment, but with daily monitoring and we'll go back to the center in a month, rather than the normal six weeks, to see how everything is going.

All in all, it was a great and comforting trip to KC.  I crashed when I got home, but that's normal, and then watched the Royals demolish the Giants.  Just for a little class, tonight the national anthem will be sung by one of the world's greatest mezzo-sopranos, Joyce DiDonato.  Go Royals!

It's been 12 days since I stopped taking the chemo and three days since I came home from the hospital.  I've been feeling much better--still some fatigue, but not nearly as much as before and generally able to function somewhat normally.  Monday we went out to do some errands, and then in the afternoon had two sets of visitors, including Doug and Raylene, who brought a delicious pot roast and dinner rolls.  My appetite has returned, and food tastes good for the first time in a long time.

Yesterday, a beautiful fall day with the leaves beginning to turn, we drove to KC to have a consultation with Dr. Van, the oncologist.  We had already scheduled a series of tests--full skeletal x-ray, CT scans, etc.--for October 28, so we decided that I'll stay off the chemo till then.  That means I should also be able to skip the three blood pressure meds.  So with a full month with no Votrient, my body should have time to return to "normal."  And then after the time off and the results of the tests, on the 28th we'll make the hard decision of what to do next:  should I return to 400 mg of Votrient and just more carefully monitor what's going on?  should I reduce the Votrient to one pill of 200 mg?  (No one seems excited by that prospect.)  should we switch out the Votrient for another medication (Sutent) of the same class of drugs unsure of what would the efficacy and the side effects of that decision?  or should we try another class of chemotherapy that generally has fewer side effects but is also generally less efficacious?  In the meantime, there are fewer pills, fewer naps, and a new obsession with the Beach Club sandwich from Jimmy John's.  What the cancer cells are doing inside my body without their toxic enemies fighting back is, for the moment, an unanswered question.

It's amazing how a relatively intelligent person--in this case, me--can be so dense about important matters.  After endless complaining about lack of energy, by last Wednesday things had reached a turning point.   I couldn't dress myself without resting between each item of clothing.  I'd be thirsty, have a glass of water on the table in front of me, but not be able to summon the energy to bend forward and pick it up.   I could talk only in a raspy whisper.  Luckily, I wasn't alone, and Mohamed insisted that we go to the ER.  I called the oncologist in KC, but we agreed that a trip to KU Med would be too much, so we went to the ER at Stormont-Vail, Topeka's largest hospital, where I began a three-day stay.

Saying the words 'stage 4 cancer' got me to the front of the triage line in the ER. Since I had had uncontrollable diarrhea for several days, the first test was to eliminate clostridium difficile (or C. diff), a dangerous infection that is common in some cancer patients.  The tests for that were negative, which was good news indeed.  I was suffering from acute kidney failure and severe hypotension (80/40 when I entered the hospital).  Because of the diarrhea, the kidneys had nothing to process and had shut down.  For the next three days, I was pumped full of various fluids.  I kept thinking of the scene in Catch-22 with the soldier in white who has one bag of fluid pumped in, one drained out, and the two bags exchanged every several hours. 

Once the diarrhea had stopped (I'd quit taking the chemo), the kidneys began to respond, and after a couple of days, they were functioning normally again.  The blood pressure was a little slower to respond, but it's now back at normal levels.  The Votrient raises the blood pressure so much--this an immediate effect over three years ago--that I've been taking three different anti-hypertensive meds to keep it under control.  For the moment, I'm off both the chemo and the blood pressure meds.  Tuesday we go to KU Med to consult with the oncologist and see what the next steps will be.

Wednesday was an extremely scary day.  Even the normally unflappable Mohamed was alarmed.  As always, he took good care of me, beginning with his insistence that we go immediately to the ER.   The hospital experience was decent enough.  The bed was too short ("it doesn't fit anyone 6' or taller," said one of the nurses).  The food was passable when Mohamed wasn't bringing in nourishment from outside.  Friday night, our friend Laura brought in lamb biryani for me, so at least I had something spicy, and my appetite seems to have improved, as has my energy level. 

Saturday was frustrating as I waited all day for discharge, getting testier and testier as the day progressed with no sign of the doctor.  Finally, around 6 p.m., I was leaving when I felt warm liquid running down my left arm and hand and saw blood spots trailing through the hospital lobby.  Because I take an anti-coagulant every day (that's the morning shot to the stomach), the place where the IV port had been removed was bleeding.  That taken care of, we headed home. 

I'll blog again on Wednesday after our appointment in KC with Dr. Van.  In the meantime, we're just monitoring things like blood pressure, but I'm feeling much better and actually have a little energy.

Thursday we made our six-week visit to the KU Cancer Center for blood work, a consultation, and the $11,000 bone-strengthening shot.  Marci, the phlebotomist, was there, but luckily I didn't get her.  The blood draw went smoothly, and then, after vitals were taken (I'd lost another 4#), we talked with Jennifer, the physician assistant.  The blood results were about the same as always, so no change in medication.  There was a slight wait for the injection, but the nurse was efficient, and, although the shot often stings, it was relatively painless.  When we go back in six weeks, I'll have the whole megillah of tests: full skeletal x-rays, CT scans, and blood work.

Despite some miscommunication, we met our friend Scott for coffee at the center and caught up on what's going on in his busy family life.  And then as always, even though there had been nothing particularly difficult about the day, I fell asleep in the car on the way home and headed straight to bed once we arrived. 

I feel bad that I haven't posted more often.  My energy level has been so low and we've done so little (I went ten days without even leaving the house) that when I think about posting, it just seems too difficult.  I ought to have something to say about the races for Kansas Senator and Governor; in both cases, the incumbent Republicans are in trouble, and the campaign strategies of all four candidates are interesting.  Maybe I'll pull myself together one of these days and blog about that.

Friday it was back to the KU Cancer Center for blood work and CT scans.  Mohamed prefers early morning appointments since there's usually little waiting, so we were up at 5 a.m., out the door at 6, and in our parking spot at 7:15.  The waiting room was fairly empty, though that changed quite quickly.  I remarked that I didn't see Marci the Maladroit in the room where they draw blood, at which point Marci emerged and called my name.  She was on her game and found the vein, drew enough blood, and put in the appropriately sized IV.

From there we descended to the basement, where they do the x-rays and scans.  Again, there was very little waiting.  The most boring part usually is the 30-40 minutes when I drink the two large glasses of water necessary before a scan.  There are only three chairs in a row, facing a wall, with only a corridor separating the chairs from the wall.  It's always extremely cold, so they give you a warmed blanket.  This time, though, another guy waiting for a CT scan entered, started drinking his water, and initiated a conversation.  He too has stage 4 kidney cancer, though it was a diagnosed less than a year ago.  He was 56 and looked healthy.  He kept finding similarities between our cases: no symptoms in the kidneys, major tumors in the leg and hip, tumors also in the spine; he too takes 400 mg of Votrient and has Dr. Van as his oncologist and sang his praises.  When he said he prayed a lot, I bit my tongue, since I think he was very encouraged when I told him that in October, it would be four years at least that I've lived with the stage 4 cancer.

The tests went quickly, and then we returned to the second floor for our meeting with Dr. Van, which very uncharacteristically took place early.  The blood tests were generally fine, though the red blood count was, as always, low, as were the thyroid numbers, so we're going to increase the dosage of the thyroid med.  More important, the preliminary results of the CT scans showed that the primary kidney tumor hasn't grown.  One of the advantages of modern technology is that once the final results and the analysis are complete, I can log onto "My Chart" from the med center and read the complete results.  Now if I could only understand the vocabulary...

We left KC by 11 and were pretty much wiped out for the rest of the day.  After the scans, they always give me a yellow sheet with instructions of what to do to mitigate the effects.  I always just drop it in the waste can on my way out.  Perhaps sometime I should read it.