Minus a Pill, Plus a Pill and the Loss of a Friend

Jeff and I attended a blood cancer survivorship conference last month.  Dr. Porter was one of the keynote speakers.  He related the early successes he is seeing with his immunotherapy for blood cancers.  Really hopeful stuff!   At the conference we learned that neuropathy and fatigue are very common problems post-BMT. We learned that there are treatments for neuropathy that some patients find helpful.  It really hit me how problematic it is for Jeff when he admitted that he has slipped on our stairs because the bottoms of his feet are numb and, most especially, when he said he was willing to try acupuncture, “as long as they don’t put needles in my feet.”  It was helpful to hear the professionals and other patients discuss long-term survivorship issues.  Questions for Dr. Porter began forming in our minds.  Maybe there is something that can help Jeff with the neuropathy in his feet, arms and back.  He has a new area in his jaw that is a little annoying, too.  Dr. Porter has said that sometimes it goes away with time.  Patients, though, tell us differently.

The weekend following Thanksgiving, Jeff drove to North Carolina for Keith’s graduation from Marine Combat Training.  This time, however, Keith was whisked away immediately following the ceremony and sent to Oklahoma for his next training course.    I was concerned that Jeff would have a lot of travel fatigue since he had no company for the drive going or coming.  He made out just fine although he sounded pretty tired when he called me at the end of those travel days. 

Jeff saw Drs. Porter and Rager last week and got an excellent report on his blood work.  He went armed with a list of questions.  He asked whether he ought to be immunized for shingles (those darn commercials remind you how miserable shingles can be).  The answer was, “no,” not while he is still immuno-suppressed.  The immunization probably wouldn’t do any good.  However, Jeff can start weaning off of the Cellcept.  He is to drop one pill each month (that’s minus one for now).  That would mean he would be off of it entirely by March, if all goes well. 

Jeff asked about acupuncture and massage (which has helped a little in the past) for neuropathy.  Dr. Porter prescribed Neurontin (that’s plus one) but did not think he needed to see the neurologist again.  He should take one pill at night to see whether that is all he needs.  He can have up to three a day but it may make him dizzy.  This drug was really helpful when he was on it before so maybe he will have luck with it again. 

Yesterday we had sad news from our friend, Marie.  You might remember that we’d met Marie and her husband, Jeff R., when the two Jeffs were being treated on Rhoads 7 at Penn.  Marie emailed to say that her Jeff was hanging a wreath over his garage door last week when he fell and hit his head on a stone wall.  He died from his injuries yesterday morning.  Oh, how very sad!  His enthusiasm for life was contagious.  We cannot believe he is gone.  My Jeff says he is glad that Jeff R. did not die in bed wracked by disease.  He was doing the things he enjoyed doing.  Prayers for Marie, if you would be so kind.

Life is Good

It has been so long since our last blog entry that we thought we’d better give an update.  Some people are noticing the time between entries gets longer and that is due to a lack of anything significant to report.  That is, anything significant to do with Jeff’s health.  News, however, we do have!

First, let’s get Jeff’s health report out of the way.  Several weeks ago Jeff began to slow down considerably.  He was quite forlorn about not having energy to do anything.  He met minimal social obligations, did not work much at all and had trouble making decisions about the simplest things.  We talked about the possible reasons for this.  A lingering cough could indicate an infection.  Perhaps he had mild depression; the NMDP told us to expect this at about a year post-transplant.  Maybe he was just missing those steroids.  After several weeks, we called Dr. Porter’s office to report this development.  Dr. Allison Rager returned the call and, honing in on the cough and cold symptoms as the likely culprits, she gave Jeff her expert opinion.  Jeff called me at work to relay Dr. Rager’s advice, “This is really out of my area.  I think you need to see your family doctor.”  The family doctor!  Neither of us had thought of that!  We had a good chuckle over our dependence on the oncologist.

The family doctor diagnosed allergies.  This is not the time of year that pre-transplant Jeff suffered with allergies.  Perhaps we are discovering new things about his immature immune system.  Fatigue continues to plague Jeff and keeps him from working as much as he thinks he should be able to.  He described it to a friend, “Work a day, sleep a day…” which is probably a generous estimation of his work schedule.

In other news, Jeff and I vacationed in Savannah, GA, in the days just prior to Keith’s graduation from Marine Boot Camp at Parris Island, SC.  We were more than a little glad that Keith’s shoulder injury delayed his graduation from August to October as we enjoyed temperatures in the 70s.  Jeff sweat profusely as we walked the town so we were sure that August heat would have prevented our enjoying this beautiful walking town.  We toured the Roundhouse Railroad Museum, Juliette Gordon Low’s House, saw some film locations including the park where Forrest Gump sat on a bench declaring, “Life is like a box of chocolates…”  We saw SCAD’s Little Black Dress exhibit, took a horse and buggy ride and ate at three of Savannah’s five best restaurants.  Food highlights included Jeff’s tur-duck-en burger and Amy’s Gator Gumbo.

On Wednesday of graduation week we toured Parris Island alone.  We would not be allowed to see Keith until Thursday.  Late Wednesday afternoon we saw the new Marines practicing for graduation.  We scoured the sea of uniformed young people, hoping to catch a glimpse of Keith.  Other parents whispered excitedly, “Is that him?”  Someone lent us their binoculars and we picked Keith out of a large mass of humanity, the largest graduating class this year (700+).  After taking about 20 pictures with zoom, we realized that it was not Keith after all!  We eventually found his platoon and picked him out successfully.  Keith said that as he stood rigidly “at rest” in platoon formation, he heard his dad’s laughter and knew we were nearby.

Keith showed us around the island on Thursday.  It was nice to talk to Keith for the first time in four and a half months especially since his letters had become scarce towards the end.  He told us he learned how to sleep on command - or at will - but that he’d had very little sleep over the last few days.  In fact, he fell asleep during our tour of the Recruit Chapel and, after his brief snooze, we returned him to his platoon.  That evening, we picked Kim up from the Savannah airport and also made arrangements to have lunch with Jeff’s cousin, Joyce, and her husband, Milt, on our way home after graduation.

On graduation day, Jeff, Kim and I saw the Colors Ceremony complete with performances by the Marine Corps Band and uplifting remarks from Commanding General Lori Reynolds.  Graduation itself was really like a giant parade.  Sergeant Legend, the Marine dog, made his appearance in his dress uniform.  Finally, it was over and it was time to load Keith’s paraphernalia into the car and head home.

Our ride home was an ongoing celebration as people we met along the way congratulated Keith and thanked him for his service.  We had lunch with Joyce and Milt in South Carolina and breakfast with Keith’s cousin, Harry, in North Carolina the next day.  Kim shared driving duties with me on the way home and we had a friendly competition to see which of us would get the best gas mileage out of the new Kia.

Superstorm Sandy extended Keith’s leave for two days while he waited for a flight to North Carolina for his next training.  We were without power for just two days and were glad to have Keith’s help to run the generator.  I was off of work for a week as a result of the storm.  Jeff and I cuddled under a blanket listening to a Zane Grey novel.  Fun!  The storm and the time off of work also allowed me to spend more time with my mother, recently placed in at-home hospice care for a GI tract cancer, and my sister, Tracy, who was visiting my mother from Colorado.  

Last weekend marked another year with our traditional annual celebration of Oktoberfest!  Jeff declined to participate in the Strong Man, Bist du Stark, competition, accepting his limitations easily.  At Oktoberfest we finally were able to share the best news ever:  we are going to be grandparents!  Kerry and Theresa had shared the news with us a few weeks earlier over Goodnoe’s ice cream and are finally comfortable making the news official.  Jeff and I are busy trying out names for ourselves although friends have warned us that sometimes grandparents are dubbed by their grandchildren, despite any preferences the adults may have.  We can’t stop our brainstorming on the subject, regardless!  

Life is good!

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.

Noon at 9 O’Clock, Team Bist du Stark and Sooner Rather Than Ladder

It had been a few days since our last sighting of the frog formerly known as “the little one.”  Now it is the middle-sized one and we were getting worried that something had happened to “Noon.”  We sat down to eat dinner in the screen house and Jeff said, “There’s one of them on the rocks!”

I looked over at our little round pond and said, “It’s Noon!”

Jeff said, “No, it isn’t.  It’s 3 O’Clock.”

We simultaneously realized that both of the little ones were there but not in their usual places.  I said, “Oh, do you see Noon at 9 o’clock?”

Jeff said, “Yes, and 3 O’Clock is at 6 o’clock.”  He laughed at our ridiculous conversation and decided it was a little like Abbott and Who’s On First.  For your listening pleasure, here is the classic: http://www.youtube.com/watch?v=sShMA85pv8M

Jeff was very tired on Tuesday, the third night he applied his clown make-up medication for his face rash.  He is supposed to rinse it off after 10 minutes but when I suggested that it had undoubtedly been 10 minutes already, he sat inert.  He watched TV through TWO more commercial breaks and finally rinsed.  The next night he realized he was too burnt to do another treatment.

The dermatologists saw Jeff on Thursday and agreed he was burnt and that he should discontinue the treatment.  Jeff thinks he may use the mask once a week since it did seem to help.  He will, however, have to use it as directed!  Another medication was prescribed which is often not covered by insurance for patients past twenty years old.  It is an acne treatment.  A second medication was prescribed in case the first was prohibitively expensive.  On Friday, I went to the pharmacy and picked up the medication.  It was $45 which is more than our usual Rx co-pay but less than the bazillion dollars that the dermatologist suggested it may cost.  Jeff used it this morning and said it dried his skin.  That might be good since pustules continue to appear.  The rash is beginning to appear on his chest as well although this area does not appear to be infected.

Jeff asked the doctors why this continues to be a problem for him.  They said it was due to the low dosage of Prednisone he is now taking, “Less steroid, more rash.”  They do not seem overly concerned.

Kim and I visited Bartram Gardens in Philadelphia this morning.  Then we had lunch at a bar where Kim had seen Harrison Ford filming on Monday (it’s near her work), and then we went Shopping For A Cause at Macy’s.  Our cause is, of course, the Leukemia and Lymphoma Society’s The Dude Hates Cancer event.  The link to Kim’s team’s webpage is available from their picture at right or you can link to Kim’s page here:  http://epa.tdhc2012.llsevent.org/ng/index.cfm/b340ae/regPages/pledge/KIMLOUX/

While Kim and I were shopping, Jeff installed a small air conditioner in our bedroom.  It is a wall unit to assist our central a/c on the hottest nights when the upstairs doesn’t quite stay cool enough.  Our old, old, old, old unit broke this summer and although we have not needed it much this year, some years we really do need the extra boost.  Naturally, the new unit required a differently-sized hole in the wall than the old unit.  Jeff started this project a couple of weeks ago and petered out.  He tried several times to get the job done.  This is the kind of project that would have been a small task for the old Jeff.  I began to worry that the new unit would be out of warranty before we ever plugged it in.  Uncharacteristically, Jeff had left the ladder propped to the back of the house from start (weeks ago) until finish.  I mowed around the ladder at least twice.  Jeff suggested painting the ladder white to match the house so he wouldn’t have to take it down at all.  Ha!  Anyway, it was a nice surprise to see the project finished on the outside at least, the siding replaced and ladder collapsed on the grass.  Jeff will need to have help returning the ladder to the garage.

Week two at 2.5 mg of Prednisone begins tomorrow.  Continued prayers, please, for a successful taper.