Guessing Games

There is a thing that people do in oncology waiting rooms.  Often oncology patients have a companion along for their doctor visits so everybody looks around the waiting room guessing which of each pair is the patient and which is the companion.  I remember doing this at the cancer center at Aria one time.  I noticed a young man - he couldn’t have been more than 30 years old - with a deer-in-the-headlights expression and a young woman gripping his arm and leaning into him.  I recognized Jeff and me in their body language and I could tell he was the patient.  At Penn’s Perelman Center it is even easier to tell which is which because one in each pair is often bald or masked and gloved.  Sometimes the game is challenging in elderly couples when both look frail and sickly.

As we waited in Dr. Porter’s waiting area on Friday, we chatted with a couple of women.  One of them had spiky, possibly new, hair and Jeff and I both guessed she was the patient.  As we talked with them, we discovered we were wrong; it was the other woman who was the patient.  Before we had a chance to give them a brief history of Jeff’s illness, the lab technician came out and called, “Loux!”  Jeff hopped up and went toward the door of the lab.  As a testament to how well Jeff is doing and how hale and hearty he looks, the woman evidently guessed us wrong.  I heard her say, “Oh!  I thought it was her!”  We later related this to Dr. Porter who was appalled that the woman spoke loud enough for me to hear.  I just laughed.  I knew Jeff would get a lot of mileage out of that one!

While we were in the waiting area, a woman came out of the lab sporting two bandages.  Jeff commented with an “Ugh!  They had to stick you twice?!”  The poor woman reported that they needed a lot of blood and her vein didn’t cooperate after several vials were drawn.  So, yes, they had to stick her in the other arm.  She was disgusted.  Jeff admitted to a vanity I was not aware he had.  He said he rips off the bandages before we leave the office, “So that people don’t know I’m sick.” 

Jeff has fewer side effects to report these days.  He did report his gag reflex has become sensitive again so that coughing brought on vomiting one morning last week.  He also asked about the hot flashes he’s been experiencing.  Dr. Rager said that she doesn’t know why it happens but some BMT patients report having hot flashes.  Dr. Rager was keen to check Jeff’s legs since we’d had to call last week to report some pretty serious swelling in both legs.  When she pressed on his shins, it took several seconds for the depression to level out again.  She was glad when we told her it had improved quite a bit and she said she would discuss with Dr. Porter the possibility of doing an ultrasound of the legs.  Later, she and Dr. Porter decided on urinalysis instead.  Dr. Porter said there didn’t seem to be any reason for the swelling except the steroid taper.  And he said “no more steroids.”  Yahoo!  In two months they will begin to taper the Cell Cept (immunosuppressant). 

 

It is Jeff’s wish to be told he doesn’t have to see Dr. Porter for six months – or more.  Dr. Porter said, “We’ll see you in six weeks.  No, let’s make it two months.” 

Jeff hinted that was too soon for his liking and said, “You never answer this the way I want but I’m going to ask it again anyway.  What are my chances of having a recurrence?” 

Dr. Porter paused, then told Jeff that it is important to monitor him for two years because 80% of relapses occur in the first two years after transplant.  He said, “We’re at 16 months.  You’re doing well and we want to keep it that way.”  And, of course, we know that there is no definitive answer to the question of whether or when there will be a relapse.  It’s a guessing game.

The results of Jeff’s cytogenetics (chromosome) study, done last visit, were good.  There are no mutations in his cells - no 5q- deletion - no mutations!  Jeff’s donor’s marrow continues to make good blood.  We learned at Gilda’s Club last week that some patients seem to get their donor’s allergies which may explain why Jeff had no spring allergies this year (his typical allergy season) and, instead, is suffering with some fall allergies.  We’ll have to ask his donor about that.  Speaking of his donor…

This week we heard from Joanne, the donor-recipient matchmaker at Dr. Porter’s office.  She was sad to report that Jeff’s donor wants to remain anonymous.  We can still write but she declined to let her identify be known.  We understand.  Our gratitude for her gift far outweighs our disappointment over not being able to make a more personal contact.  Hers is a gift that keeps on giving. 

I am happy to give an update on Team Bist du Stark and The Dude Hates Cancer fundraiser.  Team Bist du Stark raised $2,300 for the Leukemia and Lymphoma Society.  Thanks to the bowlers and to all who supported our young folks in their efforts.  Many, many thanks!

The Dude Hates Cancer and Swollen Legs

Kim and her cousins did an excellent job raising money for the Leukemia and Lymphoma Society at The Dude Hates Cancer bowling event.  Last year, you may recall, the cousins braved a dangerous thunderstorm to attend.  Jeff and I could only cheer for them from the safety of our home.  Radio and television reports strongly suggested people stay at home but the young folks insisted on keeping their commitment to bowl!  In fact, Amy Lyn, Sarah and Becky did have trouble getting home after the event.  It was a nerve-wracking evening for the older generation and exciting, I’m sure, for the younger one.
 

By contrast, last night was a beautiful evening for the event.  A vendor truck was parked in front of the bowling alley; frozen yogurt with awesome toppings was being sold under the name “Whirled Piece.”  A portion of their proceeds was being donated to the cause so, of course, Jeff and I partook.  Otherwise, the food at North Bowl seemed to be limited to their famous Tater Tot bar.

Jeff recently had been invited to join two bowling leagues – from two different circles of friends.  He was entertaining the idea of joining one when I asked, “Can you bowl?”  He seemed surprised by the question and then realized he had no idea whether his right shoulder would cooperate for the movement required for bowling.  There was also a question of strength.  I sent Kim a text and asked whether she thought her Dad could throw a ball or two at The Dude Hates Cancer as a test.  “Sure!” she replied.  A couple of our young people who were scheduled to bowl for the Bist du Stark Team were unable to attend.  So Jeff and I stepped in and bowled as one bowler, alternating turns.  Of Jeff’s five throws, his first were goose eggs but he did throw a strike.

We were probably the oldest people in attendance and our young ‘uns were very gracious to let us participate.  After we watched one game, bowled the next, and had my cheeks swabbed for the registry, we left to have dinner on our own.  Our cute team shirts with our names embroidered on the “pockets” drew stares as we walked the streets of Philadelphia.  The shirts came in handy at the loud restaurant, though; when we gave our name, we only had to point to the shirt.

Last Thursday, Jeff noticed that his ankles were swollen.  I don’t think he would have mentioned it to me except the swelling didn’t go down overnight and he became concerned enough to let his doctors know about it.  Dr. Allison Rager called Jeff to discuss it.  She decided that it was probably due to something salty he ate or, perhaps, from standing too long.  Not to worry, she said, since it was happening in both legs.  If it had been one leg only, they would worry about a blood clot.

Well, I don’t know what Jeff ate last week that would still be causing a problem.  We have avoided salty foods since then.  When we got home from church today, Jeff said his one shoe was beginning to hurt.  It was no wonder his shoes hurt.  His feet and ankles were swollen quite remarkably.  He spent the rest of the day lounging with his feet up.  Hopefully, this will not continue to be a problem.  Jeff will see the Penn dermatologist this week as well as Drs. Porter and Rager.  It is a relief to me that he will be seen soon.

Toupee? Cold Turkey?

A couple of weeks ago at church, one of Jeff’s cancer compatriots asked me if Jeff’s hair was “real.”  I assured Bob that it was.  Still, he reached from the pew behind us and pulled Jeff’s hair.  Then he declared, possibly a little too loudly for church, “I thought it was a wig!”  It was all in good fun and we laughed.

This week at church, Bob told us that he’d gotten in trouble with his wife for the hair-pulling incident!  Evidently, Lee was embarrassed by it.  She explained, “It’s his medicine.”  She believes it makes him say and do things he wouldn’t ordinarily say or do.  Jeff wasn’t so sure he wouldn’t have pulled a similar prank pre-cancer. 

Since we had conflicting instructions from Jeff’s two oncologists regarding his steroid taper, Jeff called to find out whether he was going “cold turkey” after two weeks at 2.5 mg or whether he should continue to taper, taking this lowest dose every other day.  Dr. Rager decided he should continue every other day, and that he really should have his blood checked again this week.  Jeff was a little disappointed to have to make the trip again.  He looks forward to being told, “Come back next year.”  I wonder whether that will ever happen and would, quite frankly, be frightened if he wasn’t checked regularly. 

On Sunday Jeff had his first steroid-free day since early December.  His skin seems to be managed well with his newest skin medication.  Although he does have flare-ups, the spots do not seem to fill with pus.  He has a darn good-lookin’ face!  

Lincoln, our new friend from Gilda’s Club who also has a diagnosis of MDS, is at Sloan-Kettering now undergoing his transplant.  He has been photo-blogging using the clever URL, http://www.justmarrowed.blogspot.com/, and reports that his oncologist will be taking on a famous patient this week, another MDS patient, ABC’s Robin Roberts.  We wish Lincoln and Robin the best.

The Claus Cousins’ team for The Dude Hates Cancer Bowling Event has gotten a slow start with their fund-raising.  If you can help, click on the link at right to make your donation. 

September is Leukemia and Lymphoma Awareness Month.  We thank God for the financial help that the Leukemia and Lymphoma Society gives us for reimbursement of expenses.  Please join us in praying for patients and their families, oncologists and their staffs, marrow and blood donors.