Update

The MRI results finally arrived at KU Med and were analyzed.  There is a tumor on four vertebrae--T5 through T8.  I'll undergo radiation treatment at the same Topeka facility that I used in 2011 for the radiation on the scapula and on the femur and hip.  Although this isn't great news, it's a relief at least to have this stage in the waiting over.  Now we'll wait to arrange the radiation.  The last time, there were 10 sessions on the scapula and 11 on the femur.  There weren't any bad side effects from the treatment, and we liked the doctor who was in charge.

Still waiting

And I hate to wait.  I haven't posted anything this week after the MRI because I keep thinking that any minute (or hour or day) I'll get news.  So far, though, nothing. 

I had the MRI Monday morning at Stormont-Vail, a Topeka hospital.  It went smoothly.  Unlike at KU Med, here you're allowed headsets to minimize the constant banging of the MRI machine.  I chose an RnB station, but I could barely hear the music over all the racket.  You're also given a squeeze ball in case you panic, but I was so far from panicking that I think I actually fell asleep for a few minutes.  I was then to call to Med Center on Wednesday to set up whatever comes next.  After navigating the menu, I left a voice mail for Dr. Van's patient care manager, not my favorite person to deal with at the center.  She called back later to say that they didn't have the results, and if they didn't have them by Friday, she'd call Stormont-Vail.  I insisted several times that she call that day, but she just kept repeating that she'd give me a "shout out" when the results came in.  When I heard nothing yesterday (Thursday), I emailed Jennifer, the Physician Assistant who works with Dr. Van and whom we like a lot.  I've found that emails are more effective than phone tag.  She wrote back that she'd have the assistant check out why there were no results yet and get back to me.  It's now 8:45 on Friday morning, and I've heard nothing.  Should I be the squeaky wheel yet again?

I realize that the branch of the Med Center that I go to is devoted solely to cancer patients.  Everyone with whom the doctors and staff deal has cancer, so in some ways, it must seem to them as the norm.  From the other side, however, the long waits (it was three weeks between the initial finding of growth in the tumor on the spine and the MRI) can be very frustrating.  Perhaps the MRI will reveal that the tumor's increase in size is insignificant, but even if I know today, it'll will have been a month before there can be a consultation to decide what to do next, if action is called for. 

Mohamed and I have often said that the hardest part of the last 4½ years was the month between April 13, 2011 when the doctor in Topeka who had misdiagnosed me for six months (first, a torn rotator cuff, then bursitis) called to say it was cancer and the beginning of treatment.  We were in a kind of limbo, not knowing who was going to do what where and when.  A month of inaction seemed like a distant nightmare, but even if I hear something today, it'll be a month between the news that the spinal tumor is growing and any possible action. 

Thanks to all of those of you who have texted or emailed inquiring about results.  I'll post an update as soon as I do know something.  Meanwhile, my fingers are crossed (except when typing) that the results are good and the worry has been for nothing.

On other fronts, we had more Halloween trick-or-treaters than for at least twenty years.  And best of all, they were all very cute kids in costumes of all types--not a teen-ager among them.  Of course, the fact that we ran out of candy by 8 o'clock (I was convinced that Mohamed had bought too much) might account for the lack of older kids.

And, of course, joy reigns supreme in this area after the great and often nail-biting World Series.  Mohamed may, however, be grateful that baseball is over till the spring.

changes and choices

Yesterday we were up at 6 a.m. for our regular six-week trip to the KC Med Center, though this time we knew it would be a long day as the whole annual megillah of tests was scheduled: full-body x-rays, CT scans, blood draw, consultation, and five-figure bone-strengthening shot.  The day at the center started off well.  The x-rays and blood work occurred on time and went efficiently--or so it seemed. Well, there was one exception: because of the x-rays, I had to change out of my regular clothes and put on thin pants with an obviously defective drawstring--obviously because as I walked down the hallway, the pants slid to the floor. Then I sat for a very long time in the least well-planned area of the cancer center: three uncomfortable chairs in an empty hallway.  Finally, the phlebotomist returned to say there had been an error in the blood draw and we had to do it again.  Luckily, the IV was still in my arm.  More waiting ensued, and then I had the scans.

None of our KC friends was available for lunch.  Scott was in a different part of the city on his first day at a new job.  TJ, who had planned to come, had to solve an emergency problem with the Heartland Men's Chorus's website.  And Ivan, who lives in KC, called about getting together, only he was in Topeka.  Mohamed and I walked a block to First Watch, a restaurant specializing in breakfast and lunch, and since I hadn't been able to eat since the night before, I scarfed down a large helping of eggs Benedict.  

Once back at the cancer center, we had a long wait before our appointment.  The waiting room was crowded, and the people there were a rather depressing group.  We were called to see Dr. Van at the appointed time, but then there was another 45-minute wait before we were seen.  By this time, both Mohamed and I were restless and tired.  For the first time since the initial months, the results were mixed.  Although the originating tumor is in the kidney, the cancer more dramatically and aggressively initially attacked the bones, especially my left scapula and right femur.  There are other tumors in my body on other bones, and yesterday the scans had revealed that one on my spine has grown, though how significantly was hard to determine.  So now I'll undergo an MRI (yet to be scheduled), a procedure I can do here in Topeka. 

The choices; if the increase in size isn't major, we'll adopt a watch-and-monitor stance.  If, however, we need to take action we can 1) change the targeted chemo therapy, though this is problematic since the Votrient has been so effective in holding the kidney tumor in check; 2) try radiation, which was very effective on the scapular tumor, or 3) undergo a procedure to burn away the tumor and replace the destroyed bone with "cement."  To be continued...

The second major change is the Dr. Van Veldhuizen, my oncologist since the beginning of all this, is leaving KU Med.  He'll still be there for my next appointment in November.  It is, I gather, unethical for a doctor to take his clients with him, so he wouldn't say exactly where he was going, except that it was still in the greater Kansas City area.  Still, it won't be difficult to figure out his new position, so one choice would be to follow him there.  His replacement at KU Med, whom he endorsed as highly qualified, will spend only one day a week at the cancer center in KC with four days a week here in Topeka.  In some ways, it would be convenient to have my oncologist closer to home; on the other hand, Dr. Van is someone in whom we have enormous faith and whose advice has clearly been beneficial.  Also to be continued...

For the third consecutive visit, I stayed awake on the ride home--perhaps not too coherently, but awake.  Once home, however, I barely managed to undress before crashing for 90 minutes.

Yesterday was the six-week visit to the KU Cancer Center, this time just for blood work and a consultation with Jennifer, the Physician Assistant.  The waiting room was packed, and, though this is hardly a revelation, it's a good reminder that cancer is no respecter of age, race, or economic status.  The one exception is that pediatric oncology is at a different site.  The blood draw is fast and painless, and, though Marci was there, I avoided her yet again. 

After a short wait, we saw Jennifer.  The blood work was all in the normal range, so that was good news.  I'm in the second day of the week without Votrient, and the trickiest part is regulating my blood pressure, which has been running low.  When I'm on the Votrient, for years I took three meds to lower the blood pressure, but the last couple of runs, I've gone down to two, and even that reduced dosage keeps the level slightly lower than we'd like.  After over four years of taking the chemo, my body seems not to react as strongly with hypertension.  Other than drinking Gatorade, though, there doesn't seem to be much to do at home to keep the b.p. up, the new problem. 

We had planned to have lunch with a KC friend or two, but both the ones we asked had to work.  It seems so unfair that people actually have to work instead of being available for short-notice lunches.  Mohamed and I had lunch at a First Watch a block away from the cancer center.  The waiter recognized us from six weeks earlier, perhaps because we're an odd couple in the looks department.

I managed to stay awake the whole way home for the second time in a row, but then crashed for three hours once I saw the bed. 

Our next visit is October 12 when I'll have the annual full-body x-rays, CT scans, blood work, a consultation with the oncologist, and the bone-strengthening shot--a much longer and more exhausting day than yesterday.

Back again after a very long silence.  Yesterday was the regular trip to KU Med, this time for blood work, CT scans, a consultation, and the very expensive blood-strengthen shot.  All of this was scheduled later in the day than usual, a fact that meant that I couldn't eat anything until after the scans.  After a couple of years of saying that I couldn't even drink anything except water, I finally did learn that coffee is okay, so that at least helped.  The blood draw now takes place in the same place as the scans, which means that I'm not in danger of having Marci as my phlebotomist.  I don't know why but this time they took five vials of blood rather than the usual three.  It's a quick and painless process.  Next I drink two large cups of "water" (I'm still not convinced, despite what they say, that it's nothing but water).  Instead of waiting where I usually do in a cold and uncomfortable corridor, I got to go back to sit with Mohamed in the warmer and larger general waiting room.  Unfortunately, the computers weren't working at full capacity, so I had to wait for over an hour for the scans.  (These days can't be fun days for Mohamed, who not only does the driving but has to spend hours just sitting and waiting--and watching TV shows on his phone.) 

The scans go quickly and aren't difficult, much less so than, say, MRIs.  And then I could finally eat, so we walked a block and a half to a First Watch, where I gobbled eggs benedict à la Florentine, fried potatoes, and fresh fruit.  There was still another forty minute wait before we saw Dr. Van.  The blood work was all good, and Dr. Van was optimistic, but because the computers were running so slowly, the results of my scans weren't available.  I checked My Chart this morning, but the results still weren't available.  The doctors' reports when I read them are so full of doctor-ese that I can rarely understand what's being said.  I can at least understand the size of the tumor and whether it's grown.  Dr. Van didn't seem worried.  I'll do another post if there have been any major changes.  Otherwise, the schedule of three weeks on the Votrient and one week off seems to be working well.  The G-I problems have almost complete disappeared, though the level of fatigue remains the same.

July is a month of anniversaries.  On le quatorze juillet both France and I aged another year--the big 7-0 for me.  As I said earlier in these blogs, my father and both grandfathers died at 68, so I used to think that would be a difficult year.  Then after the diagnosis and prognosis, I thought, well, that's one thing I won't have to worry about.  And now 68 is a thing of the past.  The next day marked the 8th anniversary of meeting Mohamed face to face for the first time after a lot of Skyping.  (We're hoping those sessions aren't in the NSA cloud somewhere.)  And this Friday we celebrate our second wedding anniversary. 

A friend gave me a copy of Harper Lee's novel "Go Set a Watchman," a truly terrible work.  The first hundred pages are as overwritten, pointless, and tedious as anything I've read recently.  Then, over a third of the way through the book, there's a crime, and I got my hopes up.  But, no, it's absolutely irrelevant to the "plot" of the novel and is quickly dismissed.  There are long, ungainly passages of exposition and dialogue that is like nothing that's ever been spoken.  The marketing for the novel was clever, but totally misleading: supposedly, Lee submitted this work and was told to re-write it from the point of the child.  But "GSAW" has almost nothing to do with "To Kill a Mockingbird."  There is one page where the story of "Mockingbird" is "alluded" to (it can't really be an allusion, since "Mockingbird" didn't exist yet).  Atticus Finch is a virtually minor character in this novel.  If anything, the novel is a bildungsroman about Jean Louise (a/k/a Scout), but her development is so confused and the plot so thin that her growth is incoherent.  One moment she is sickened by her fellow Alabamans, but soon she agrees with Atticus that Blacks are inferior, can never be educated or integrated, etc.  But still, they're "human," she argues.  Her defense of the South is based on the Tenth Amendment (states' rights).  Atticus and his doctor brother seem to base their defense of the South on the premise that the Civil War and all that followed had nothing to do with slavery, but rather on the South's right to preserve and protect its heritage.   But none of this is coherently developed or in any way integrated into what story there is.  If you want to read a powerful work on the same theme (and one which actually has Black characters in it; there are none of any importance in "GSAW"), I suggest Faulkner's "Intruder in the Dust" and the fine movie made from it.  It was published earlier than either Lee work, and I'd bet she was influenced by it.

After three months of silence, finally a report after yesterday's trip to the cancer center.  In the meantime, there had been one visit, but that was just for the blood report, which is always basically within normal limits.

Withdrawing the blood and inserting the IV is now done in the basement of the center where the CT machine is located.  It's more efficient that way (and I don't risk having Marci as my phlebotomist).  It's rather like a maze in the basement and the one place where waiting isn't particularly pleasant.  It's also extremely cold since the machines generate high heat so that the a/c runs continuously and since I'm drinking two large glasses of ice water.  For the male patients waiting for a scan, there are just three chairs in a corridor.   I cuddled up in my heated blanket, and the magazine selection, happily for me, was nothing but male fashion rags--not exactly intellectual stimulation, but certainly pleasant enough viewing.  After nearly an hour, I went in for the scans.  I don't have to undress, just slide my jeans down to around my knees and lie on a table which slides me in and out of the machine.  First they take scans without contrast; then they add whatever contrast is (and after all these tests I still have no idea) through the IV.  There's an immediate metallic taste.  A few more scans, and it's over.

For some reason, the cancer center has a horrible cafeteria.  Since the building was once the original headquarters for Sprint, it's always rather surprising that the cafeteria is so small.  I can't eat for four hours before the scans, but we had brought some cinnamon crisps from Panera, so I wolfed one down and then went outside for a smoke.  Yes, I'm aware of the irony of continuing to smoke, even if at a much diminished level, while I'm undergoing cancer treatment.

The next step was seeing Dr. Van, who seems to have made a New Year's resolution to run on time.  Quite uncharacteristically but for the second time in a row, he arrived in our room promptly as scheduled.  We had some questions to ask him (I've been getting late afternoon headaches, for example), and we were so involved in those that we actually forgot to ask about the results of the tests.  He brought them up, however, and they were all good.  For yet another three months, the primary tumor has not grown.  That was good news indeed, of course, and we'll continue on the current schedule of three weeks on the Votrient, one week off.

The last stop was my hugely expensive (for some reason, the price varies unpredictably between $10,000 and $13,000 a shot) bone-strengthening injection.  For another unfathomable reason it has to be scheduled an hour after we see the oncologist, a wait that always seems unnecessary.  Almost everyone at the cancer center is very friendly, almost everyone except the woman in charge of these shots.  Fortunately, she wasn't there when we arrived, and a friendlier woman got us in early for the injection. 

We stopped at Stroud's, the world's best pan-fried chicken restaurant, on the way out of town.  Both of us ate way too much, but we both stayed awake for the ride home, though then we promptly crashed for a couple of hours.  Even though these trips aren't physically taxing and even though neither of us is a worrier, still, there is something about the uncertainty that takes its toll even when all the news is good.

Sheesh...I haven't updated the blog since before Christmas.  Is anyone still checking after such a long hiatus?  The holidays were quiet, but pleasant.  I did contemplate blogging after the Charlie Hebdo incident, but obviously didn't. 

Tuesday, however, was our six-week visit to the cancer center, this time with CT scans, and I do always blog with medical news.  The weekend before had been somewhat unsettling as two friends/acquaintances, including one of the blog followers, had died of cancer.  I had been on the new regimen of three weeks on chemo, followed by a week's break.  Three weeks seems to be about the most I can take, since some of the problems associated with the chemo had returned. 

The first appointment was at 11, so the morning was relaxed before we left.  The blood work was done in the same part of the clinic as the CT scans, so I didn't risk an encounter with Marci.  They drew the blood promptly at 11, but then, after I drank the two large Styrofoam containers of water, the wait seemed interminable, especially as the CT machine didn't seem to be in use.  Finally (and uncharacteristically), I complained, and they stuck me in the machine.  I don't even have to undress for the scans, just pull my pants down and hold my breath a few times as the machine whirrs.

There was a two-hour break before the consultation, so we went a mile down the road to Strouds, famous for its pan-fried chicken and cinnamon rolls--nothing like a nutritious, low-calorie meal for a cancer patient.  We were back at the center exactly at 2, ready to see Dr. Van, who is always running very late.  In about five minutes, he came into the room.  I expected him to say that he'd be back as soon as possible, but instead he was ready for the consult. 

All the news was good.  The blood tests were mainly within the normal parameters (there are always some outliers), and the kidney tumor had actually shrunk a bit--not a significant diminution, but certainly a good sign.  The bell curve of prognoses for stage four kidney cancer with the height at 10 to 11 months is clearly skewed right, and after over four years, I'm thankfully somewhere on the long, right-side tail.  So with everything holding steady, I'll stay on the same chemo schedule, and we'll check in again in another six weeks.  The G-I problems have abated somewhat; my blood pressure is erratic, but never too extreme in either direction.  In terms of quality of life, it's the constant fatigue that is the most debilitating, but with Mohamed at my side, we keep calm and carry on.