Enjoy Yourself While You Can

It’s not exactly what you want to find in your fortune cookie when you are awaiting results from a biopsy.  Jeff texted a picture of his fortune, “Enjoy yourself while you can.” He thought, “Oh, boy.”  Daughter Kim replied, “Geez.”  Fortunately, fortune cookie fortunes do not flawlessly foretell our futures. 

One afternoon, I was reading with three-year-old Rosie when Grandpop Jeff called.  I am not sure whether Rosie heard the word “hospital” or sensed something in my tone but when I ended the call and picked up our book she asked, “We’re okay, right?”

"Yes, we’re alright.”  A fleeting thought occurred to me.  How would she take it if she saw her grandfather sick?  What would we say to her when we ourselves wouldn’t know what the future holds? 

We’re alright. 

We’re waiting. 

I was scheduled to visit my sister, Tracy, in Colorado.  Jeff and I decided there was no reason to postpone the trip and so I went.  While I was away, the biopsy results were posted online.  It had been more than a week since Jeff’s procedure.  I read the report and could now expand my vocabulary with the help of Google:  “Membranous Glomerulopathy” and “Tubular Atrophy and Interstitial Fibrosis.”  I called Jeff, prepared to share my newly acquired understanding of kidney disease.  Although I called at what I believed to be a convenient time for him, Jeff did not answer my call. 

It turns out there was a good reason for that.  Granddaughters Rosie and Penny were playing in our living room.  Son Keith was in the garage working on his classic car.  Keith yelled, “Dad!” Jeff left the girls in the house and ran to the garage. 

Keith had crushed (and nearly severed through) two of his fingertips when he tried to catch a falling car part.  Keith refused to go into the house; he might frighten the girls with his grisly injury.  Jeff told him to lie down on the floor of the garage and raise his hand. Then he went inside to get a towel to wrap Keith’s hand and call 911.  Jeff’s distress was reflected by Rosie’s screams.  Jeff held 14-month-old Penny and stood in the entry where he could watch Keith for signs of shock and keep an eye on Rosie in the living room.  As soon as the ambulance pulled away, Jeff returned my call.

Keith's injury provided a diversion of sorts. The next morning a skilled surgeon worked on his broken fingers, sewed him back together with about 25 stitches and a “bionic” fingernail.  He spent two nights in the hospital receiving IV antibiotics.  His fingertips are saved!  Splints, PT and time will heal them. 

Jeff was busy seeing to Keith and it was a couple of days before I told him that the pathologist’s report was available online.  It was another several days before Jeff’s appointment with the kidney specialist, Dr. Pathalpati (“Dr. Pat”).  Jeff wanted me to accompany him so he’d made the appointment when I would be back from Colorado.  We were both anxious to hear Dr. Pat’s interpretation of the results. 

Dr. Pat identified three possible causes for the kidney disease – the cancer itself, the cancer treatment or Graft vs. Host Disease.  Jeff has had some of the idiopathic conditions of Membranous Glomerulopathy – DVT (blood clot in the leg), blood in the urine, high cholesterol (attributable to the immunosuppressant, too).  The kidney damage (thickening of tissue) prevents proper filtering of the blood and “spills” out too much protein.

There is some good news.  1) No kidney cancer.  2) Dr. Pat feels Jeff will respond to an ACE Inhibitor (commonly used for high blood pressure) to treat the disease.  3) Dr. Pat is glad we caught it when we did.  She said, “In another year, it would have been much, much worse.

The tricky part:  Jeff tends toward low blood pressure and the ACE Inhibitor will lower it.  His dosage is the lowest possible, twice a day.  If it makes him dizzy, Dr. Pat may decide to give it only once a day.

The bad news:  1) +1 pill.  2)  More blood and urine tests in 2 and 4 weeks.  3) Another doctor visit in a month. 4) Dr. Pat may order an ANA/ANCA test to further explore the positive lupus result from his labs.

Dr.  Pat instructed Jeff to keep the same dietary restrictions she’d given him last visit (no nuts, shellfish or beef) and added, “No soup unless you make it yourself.”  Salt, then, too.  Okay. 

I was happy to report that Jeff was “willing to make those changes” and was “making good choices."

Jeff snapped, “Well, I am NOT enjoying it!” 

For everything Jeff has gone through, he has every right to be cranky once in a while.  However, he rarely is cranky and his reaction was a little embarrassing.  I calmly responded to his outburst, “I didn’t say you were enjoying it.  I said you were willing to make those changes.  A lot of patients are not.”  I reminded him again that he often enjoys his food, even if he is missing some of his favorites.  Dr. Pat listened but did not say the words Jeff wanted to hear, “Eat anything you want."

Maybe I should expect to see more of Mr. Cranky Pants.  It’s coming up on “Doctor Month”.  In addition to the several visits already scheduled, he knows he needs cataract surgery (his eyes seem to be getting worse, quickly) and he only just finished his dental appointments to take care of cracked teeth (oh, that chemo) when a cheery reminder card arrived with the message, “It’s time for your next dental appointment.”  Jeff has not worked his regular schedule for a few weeks because he has had labs, procedures, doctor visits.  He is frustrated.  I can tolerate his grumpiness.  After all, it’s good that he feels like working.

Prayers for patience, please, and that Jeff sees improvement in his kidney function.  And, you know what?  That fortune cookie offers advice we all should heed, “Enjoy yourself while you can!”

a.m. Stress, p.m. Relief

We won’t have the results of Jeff’s kidney biopsy for several days and yet we both feel a little less stressed being on this side of it.  As usual, Jeff’s levity helped make it fun to spend time with him – even in the hospital.

Nurses prepped Jeff for the procedure and then we waited.  Jeff passed the time by eavesdropping on the nurses’ conversations.  Evidently, there was a problem with one of the patients and things were backing up while the issue was addressed.  Unsure what to do about the logjam, one nurse said, “We just need to get someone out of here.” 

“I’ll go,” Jeff hollered. 

They weren’t having it.  Eventually, Transport wheeled Jeff into CT/Radiology and I was asked to come along.  As he was positioned between privacy curtains and I took a seat, he asked me, "Are you nervous?" 

"Who, me?” I laughed at his misguided concern.  (He later told me that I looked scared.) 

I recognized Nurse Jennifer, the mother of one of Keith’s classmates.  She glanced at the monitor and did a double take.  “Are you feeling okay?” she asked. 

“Yes,” he said. 

His pulse was “in the 40s”.  Speaking raised his pulse to 50 and since he wasn’t feeling faint, she said all was okay.  As she attached EKG stickers, we talked about our kids.  Then she carefully explained everything that would happen.  Jeff would be anesthetized into a “twilight” state and they would tell him everything they were doing as they did it.  He would lay on his belly on the CT table the whole time and they would put him in the CT doughnut periodically to take pictures and check the positioning of the biopsy shaft and needle.  Jeff is usually a just-do-it-and-please-don’t-talk-about-it kind of patient so I didn’t think a blow-by-blow was a good idea.  It turns out he remembers telling the nurse that he would try to smile for the “pictures” - and nothing else.  In fact, he slept before, during and after the procedure. 

It took about an hour.  Jeff was asleep when they wheeled him into the holding area.  I touched him and he woke up.  A privacy curtain separated us from a loquacious man in the next bay.  Mr. Mumble would be a good name for the man.  Jeff has great difficulty in understanding anyone who speaks with an accent and yet he was responding to Mr. Mumble’s incoherent questions and commentary.  I felt like I was in the Twilight Zone.  (What did he say?)  Jeff kept answering “Yes” and “Hmmm” in a sleepy voice.  At one point Mr. Mumble said very clearly, “I’m tripping.”  Later, “This is really creepy.”  Mostly, though, I understood none of what he said. 

Nurse Jennifer was amused at the man’s “tripping."  I leaned in to Jeff and said, “They gave him better juice than they gave you.” 

Nurse Jennifer replied, “He hasn’t been given anything yet."

Jeff had to stay in recovery for three hours.  I noticed his pulse was 39 at one point as he slept –mouth agape - but when the menu arrived, he studied it for quite awhile and his pulse roared up to 52.  It was funny to watch the relationship between his activity (or inactivity) and his heart rate.  Eating raised his pulse to 139. 

Discharge instructions included not to worry about bloody urine in the first day or two, no driving until tomorrow.  Jeff was surprised by how high up his kidneys are.  He’d imagined they were just above the beltline.  When he showers, the bandage can come off.  Thereafter, BandAids will do.  He should be back to normal after a couple of days of light activity. 

Now we wait.

If Only We Could Choose

An old woman with a cane walked out of the elevator on the second floor of the Perelman Center at HUP.  Her husband followed her out, then Jeff.  The man warned his wife, “Don’t go right!  That’s for blood cancer patients.  You don’t want to go there!  We’re pulmonary, this way.”

Jeff breezed past them, headed to the right and said, “If only we could choose.”

Both Jeff and our son Keith had doctor appointments yesterday in Philadelphia.  They had to endure the overcrowded regional rail – due to the Democratic National Convention and the rail car recall which resulted in a reduction in the number of trains running.  Keith arrived on time for his visit but Jeff was a little late for his appointment with Dr. Porter – a first!  Jeff’s blood was drawn as soon as he arrived at the crowded waiting area and he was called immediately to see Nurse Heather and Dr. Porter.

Nurse Heather praised Jeff for listening to the kidney specialist’s diet recommendations.  She also guessed that chasing granddaughters helps to keep him skinny.  Jeff shared pictures of his “5^th birthday party” – pictures of his donor, Nicole, and her family, our family, the granddaughters, all our happy guests on that happy day!

“Strange” and “puzzling” are not words you want to hear from your oncologist.  Dr. Porter is perplexed.  Jeff’s liver function numbers have been inching up marginally over time, thus the need to continue the immunosuppressant.  Dr. Porter asked questions about Jeff’s visit with Dr. Pat, the kidney specialist.  Jeff said he’d be seeing Dr. Pat the next day.

The trip to the city is always exhausting.  Jeff took a three-hour nap when he got home. 

At the last visit with Dr. Pat, she mentioned the possibility of needing a biopsy so I went along on today’s visit.  If you’re counting, that’s two doctor appointments in two days.  This visit was local, anyway.  Dr. Pat greeted us warmly although Jeff pointed out later that she shook my hand – and not his - then sat down at the computer to review and note the list of Jeff’s chemo drugs that I’d given her.   “Cytoxan,” she said.  “That’s hard on the kidneys.”  She then turned her chair around and rolled it forward until she was knee-to-knee with Jeff.  She invited me to bring my chair in close, too.  She said, “We have to talk.”

Jeff’s kidneys are about 70% effective, not bad for a man his age.  She explained the results of the many, many tests she ran on his blood and urine to check for all the possible reasons for his proteinuria.  All the numbers were “decent” except for the measure of protein in his urine, one of which was 4,000 times the normal amount.  “So, we need to do a biopsy,” she said.

She carefully explained the procedure which will be done at the hospital with an interventional radiologist.  I watched Jeff to see how he was taking this news.  He looked alternately distant and then very present with very pertinent questions.  He was quiet on the way home and went to bed for another nap.

While he slept, I texted the kids to ask them to call when they could.  I gave them the update and told them that their Dad and I both heard Dr. Pat describe “cells attacking cells” and asked her whether the issue with the kidneys could be – just as it is with the liver - Graft vs. Host Disease.  She said, “We will know after the biopsy.”

On a lighter note, Jeff keeps me laughing.  We’d gotten new cell phones this week and on his first call to me with his new phone, he was taken by surprise by my crystal clear voice.

“Hello,” I said.

“Uh, is this Amy?” he asked.

“Yes, this is your wife of 36 years.”

On his  second call with our new devices, despite selecting my picture from his contacts list, he was still unsure he’d gotten the right number.

“Hello,” I said.

Pause.  “Uh.  You.  You sound so sexy,” he said.

We didn’t know our old phones were so bad.  The new ones are Fun!  

Prayers, please, for Jeff and for our readers in Russia and France, presumably other MDS patients, who have been actively reading our blog in the last couple of weeks.

Leaving Bits Behind

It was date night like the old days – a walk around Neshaminy Mall (the mall of our youth with Jeff narrating a fascinating what-used-to-be-there tour), then movie and dinner.  The theatre lost power twice during during the movie which was reminiscent of the film reel problems of yesteryear.  The Tex-Mex restaurant just outside the mall had not yet been built when we dated in the 1970s but this did not spoil the romance in any way.  Something else did. 

Jeff felt something hard in his burrito.  He turned the thing over and around with his tongue then dropped it onto his napkin with a groan.  It was a piece of tooth.  Jeff said he was leaving a part of himself “On the Border."

And so, another trip to the dentist (he was just there three months ago).  Chemo and radiation are hard on teeth and gums and so, I suppose, is growing older.  Monday morning Dr. Snead capped the tooth and gave Jeff the bad news that the tooth next to it is cracked, too.  He’ll go back in August. 

Teeth and eyes.  While walking the mall, Jeff commented that the place was foggy.  It wasn’t.  Those cataracts may need tending sooner rather than later.  Geez.

Dr. Porter ordered blood work at six weeks after stopping the immunosuppressant and, as happens every time this is attempted, the tests showed a change in his liver function indicating GVHD.  So he is back on Mycophenolate.  Jeff tolerates the drug better than most people and he insists he doesn’t have a problem with taking it indefinitely – for the rest of his life, if necessary, since it performs a vital function. 

We stayed home from church on Sunday so Jeff could collect his urine – for 24 hours!  Dr. Pathalapati wanted more information than the simple urinalysis provides so Jeff was instructed to pee into a jug from the second pee of Sunday morning through the first pee of Monday morning.  At lunchtime he was doubtful that he’d fill the jug.  By mid-afternoon he worried that the jug wasn’t large enough.  I sterilized a mason jar just in case.  He channeled Jim Croce and sang, “If I could save pee in a bottle…”  He watched TV and napped as if this was a trying ordeal.  Monday morning he finished the collection.  He’d filled the jug with only 1ml to spare!

The results of this and other blood and urine tests were posted online by Monday afternoon.  I told Jeff that his blood tests, including liver function, looked pretty good.  These are numbers I am used to seeing.  Kidney function tests are unfamiliar to me. Some of the tests had xxx’s where there should have been values (Why?).  Protein was high, of course.  This was the reason for the test.  But how high is too high?  We will have to wait for Dr. Pat’s interpretation later this month. 

More firsts together:  Yoga, Biergarten.  

More firsts for Jeff:  tried Sunbutter (sunflower seed spread) and yogurt.  

5th Birthday Bash

What do you say to a bone marrow donor?  Words cannot adequately express gratitude in this case.  Nicole once assured me that she knows what her gift of life means to us, without our having to express it. 

Our family and friends had an opportunity to meet Nicole and her family at a swim party hosted by my sister and brother-in-law, Judy and Mark, to celebrate the five-year anniversary of Jeff’s bone marrow transplant.  Each of our guests wanted to meet the celebrity of the day, Nicole, and to say “Thank you!”  She was gracious enough to hear this again and again and again.   

Here are a few pictures from the birthday bash.  Jeff and I were honored that old friends and new friends, customers, his family and mine, all came to celebrate with us. Doesn’t Jeff’s smile say it all?

Nicole and Jeff

Our Family and Nicole and Scott's

Rilling Family, Hosts Extraordinaire

The T-shirt Quilt Judy made for Jeff

Photo Credits BPK Photography