Klingons and Cellcept

Two weekends in a row Jeff developed a goose egg on his forehead (and one behind his ear) without having injured himself in any obvious way.  He didn’t walk into a door, didn’t hit himself with a hammer, didn’t bump heads with me – or anyone else.  A giant bump just popped out mysteriously over the course of a quiet evening at home and took a couple of days to disappear.  On both occasions we had been in the hot tub an hour or so before we noticed the bumps so on a third weekend, we gave the hot tub another try.  No goose egg.  Jeff was relieved to not have that Klingon look. 

Last Friday we went to the Perelman Center for Jeff’s labs.  While we were there we went over to Penn’s Rhoads 7 to see our friend, Janice, from Gilda’s Club.  We had to wash our hands before entering her room and Jeff was repulsed by the smell of the familiar hospital soap but he washed anyway.  Janice had had her autologous stem cell transplant the day before and she was sitting up in bed looking great!  Autologous stem cell transplant is a much shorter process than BMT.  Janice was admitted Tuesday, had two days of chemo and then received her own cells from two small bags containing “pale red” blood product.  We did not intend to stay long with Janice because we never expected that she would be able to carry on a conversation.  But she could! 

Janice had some nausea but otherwise didn’t feel too badly.  When the nausea got the better of her, Jeff and I excused ourselves to give her some privacy.  I returned to the room when it sounded as though things had settled down a bit.  Jeff was not keen to go back in, though.  He wandered the halls and found his old nurse, Alana, who had prayed with him during his stay here.  She did not recognize him.  He told her, “You’ll remember me when you see my wife.”  He brought her to Janice’s room. 

When Alana saw me, she shouted, “Oh, I know you!”  She hugged me and gushed over how well Jeff looked.  I told Jeff he should have thrown his head back and made himself look sickly so that Alana would have an easier time remembering him.  Alana said she was having a hard day (we didn’t want to think about what that means in oncology) and that Jeff cheered her up.  She took us to the nurse manager’s office and introduced us to the young woman, new to the job since Jeff’s stay nearly two years ago.

We left Penn and headed to the Reading Terminal Market for lunch and some cheese shopping.  Home by train.  A tiring day.

Yesterday Jeff’s lab results were finally posted on Penn’s online system.  I checked them from work and called Jeff to report.  “Your hemoglobin is 14.  That’s about as good as it has ever been since transplant.” 

“What’s the bad news, then?” he asked.

“Well, I don’t know if it’s really bad but your eosinophils are elevated like you are having an allergic reaction and your liver function tests are high, too.  How long do you want to wait to call Dr. Porter and see whether you need to do something about that?”

We debated whether to call immediately or wait and see if the doctors were concerned, too.  We decided to wait but by the end of the day, Dr. Allison called Jeff to put him back on Cellcept.  She was not overly concerned.  Labs were ordered for 2-3 weeks from now to make sure the Cellcept is working to keep things in check.

Thinking of Jeff’s donor and hoping she has a Happy Easter.  Happy Easter to one and all!

Down 14 Pills Per Week – Just a Start

At the early February appointment at Penn, Dr. Rager apologized to Jeff for forgetting to order his chimerism test before he had his blood drawn.  She really wanted it done and asked if he would be so kind as to offer another vial of blood, another stick.  He replied easily, “Sure!”  Wow.  This is not pre-transplant Jeff.  Wimp no more.  We probably won’t hear before his May appointment whether his blood cells are still 100% donor cells.

Jeff worked a couple of hours at the end of February at a friend's house installing crown molding.  He went in and out of the house, making the necessary cuts.  As soon as I got home Jeff said, "Come into the bedroom where there's good light and look at this."  That was a worrisome request.  He sat on the bed under the ceiling light, lifted his chin a bit and said, "Look at my face." 

Jeff was concerned because his skin was breaking out and he'd noticed a new hard, white spot on his forehead.  Is that all?  It always takes Jeff awhile to admit he has a skin issue going on.  I had observed a few days prior that his skin was looking pocked and bumpy - weirdly textured.  It was a familiar look.  The last leg of the Cellcept taper had begun that Sunday so we supposed there might be some skin changes as a result.  We don't want GVHD to cause problems with his skin or any organ, for that matter.  I suggested the issue could be due to his not using sunscreen.  Jeff scoffed at this because it had been such a dreary day.  At the time, he was on two antibiotics which make him extremely susceptible to sunburn (his maintenance Sulfameth as well as Amoxicillin for a tooth infection).  And the last time he had a skin issue, the suspected cause was a reaction between his medications and sun exposure.  His next dermatology appointment isn't until June so we'll have to watch and see whether an earlier visit is advisable.

A couple of days of helping Kerry with his family room renovations provided lots of fun and camaraderie for Jeff and some welcome help for Kerry.  The next day I received a text at work at 1 p.m.  It said, “I just woke up.”  We’d had breakfast together before I left for work and I knew he was tired.  Even so, I was surprised at his ability to sleep that much and have no sleep issues the next night.  He took another long nap today. 

The Cellcept (immunosuppressant) taper is now complete!  That means 14 fewer pills per week.  Blood work scheduled in three weeks will determine whether he can come off of 17 more pills per week (antibiotic and antiviral).  Only one pill box is required now and no pills need to be taken on an empty stomach.  This is huge because, as Jeff says, “Now I can eat all the time!”  It means he no longer has to store water and a pill box on his nightstand.  And he no longer has to start his day by popping pills and swigging water as soon as his "neuropathetic" feet touch the floor.  With Cellcept out of the way, he is ready to concentrate on the neuropathy to see whether his issues can be dealt with better as this will largely determine his ability to work more.

We are still enjoying Jeff’s fabulous cooking.  He does most of the grocery shopping and cooking.  And he has been a very willing helper in procuring foods for my Food Writing class.  He bought Asian Pears, California and Florida avocados, mango and kiwi, for me to choose for my show-and-tell (well, they don’t really call it show-and-tell at college).  He went out special to buy me a brand of sandwich bread that did not contain high fructose corn syrup for my Food Science lesson (Assignment:  go one week without eating high fructose corn syrup and write down all the foods you had to avoid).  He went with me to Food Bazaar (which he thinks ought to be called “Food Bizarre”) to buy guinea pig (and rabbit and some international foods).  And he and Kerry were enthusiastic tasters of the Peruvian Soup and Cuy (guinea pig) that I prepared for the Unusual Foods unit.

Since our last blog entry, Jeff spent another day helping Hurricane Sandy victims.  Jeff says the volunteers who help "rebuild" hopeless properties are, nevertheless, restoring hope.  Pray for those who are still sorting out where they’ll live and work.

Don’t Bite the Dentist and other Rules to Live By

While in hospice care, my mother and I spoke about her approach to her end of life.  I was impressed with her grace.  She told me that she “had to set a good example for her children.”  My goodness!  I guess you’re never done being a parent!  My mother had expressed her desire to be with my father for Christmas, and so she was.  A few days after we posted our December update, Mother died of her GI tract cancer.  She shared a birthday with Jeff.  Mother often said she and Jeff were "simpatico."  She told her hospice nurses about Jeff's BMT.  (Those nurses were wonderful.)  I think Mother found some comfort knowing she and Jeff were both in the cancer coterie. 

It turned out that the month of December was one of loss.  In addition to our new friend, Jeff R., who passed away in early December, and my mother, we lost a dear friend from church who was another of Jeff’s cancer compatriots, Bob.  We will miss them all. 

We were very happy to attend a 45^th Wedding Anniversary party for Jeff’s cousin, Rosemary and Ed.  We began referring to December as “Three Funerals and a Wedding Anniversary.”  Besides those events, we had quiet holiday celebrations with family and friends.  Keith was home for the holidays, sort of.  That is, while he was working for the local recruiting office, he stayed with us at night.  We may have had dinner with him twice, when he wasn't too busy visiting friends.  He has since returned to Fort Sill.

Jeff’s brother, Greg, called to wish Jeff a Happy Birthday.  Greg asked Jeff what his plans were for his birthday.  Jeff said that he’d been to the city for his blood work and later he had an appointment with the chiropractor.  Greg said, “Well, gee, why didn’t you schedule a colonoscopy while you were at it?!”  We did celebrate Jeff’s birthday with the kids on the Sunday following his birthday.  There was chocolate cake.  I made it.  It was fabulous!

Jeff caught a cold which caused him to have a reduced appetite.  One night, after noticing once again that he could only eat about half of his usual healthy portion, he saw an expression of concern on my face.  He said, "Are you worried about me?"  I truly was concerned but I could see he was eating something at least.  He is happy about losing 10 pounds or so as a result.  His cold lingers on and it has really wiped him out.  Fatigue on fatigue.  He sighs often and laments, "What are you going to do with me?"  I knew he was feeling run down when he did not offer to do a simple repair on a cabinet he made for my sister and brother-in-law.  

Jeff and I joined the Book Club at our church.  They tend to choose books that are available as audiobooks which is nice for Jeff; he can listen to them on his iPad.  In fact, we can enjoy the audiobooks together in the car or while snuggled on the sofa.  Jeff is mostly occupying his time with quiet, at-home activities but he did have a big adventure earlier this month, helping a victim of Hurricane Sandy.

My cousin’s church sends volunteers regularly to the shore to help victims of Hurricane Sandy.  Jeff was invited to go along.  I questioned whether it was a good idea for him to be among mold and crud when we’d already decided he should probably not volunteer for Code Blue.  Jeff said the germs from flooded homes are better than people germs.  Hmmm…  Well, he spent a day helping to remove wall boards from a home he felt should have been razed.  Still, he had an opportunity to speak with the homeowner who’d saved his dogs by putting them up on the kitchen counter and then jumping up with them.  They were still in the water but survived.  Jeff was glad he went and may try to go again sometime.

Jeff was notified by mail last week that he has been automatically enrolled in Medicare Part A and has the option to purchase Part B.  I suspected that he qualified due to some period of time having passed since starting Social Security Disability benefits.  It turns out that is exactly the reason.  He hit the 2-year mark.  It offends Jeff to be on Social Security - and now Medicare, too!  He was fairly irked by this news.

Our Gilda’s Club friends are doing well.  Lincoln (who was Robin Roberts’ neighbor at Sloan Kettering) was home for Christmas and hopes to come to our next meeting.  Janice is in the midst of her autologous transplant and is happy to give Jeff nanny tips as she is a nanny.  Michael celebrated his one-year post-transplant birthday.  Connie and George are as happy as ever to be among the blood cancer survivors.  Our former leader/facilitator, Marianne, is back.  She brings levity to the group.  Michael’s wife told us that Michael had, for some reason, purchased a chain saw from Amazon.  Michael has multiple myeloma and will never be allowed to pick up more than 10 pounds because his bones are “moth-eaten” and may break easily.  Still, he said it never occurred to him that he wouldn’t be able to use a chainsaw.  Later when Michael admitted he does not use a computer much, Marianne piped up, “Except, evidently, to buy a chainsaw on Amazon!”    

Last week Jeff had a dentist appointment during which Dr. Snead found a tooth that needed more work.  Dr. Snead asked Jeff to come back another day so he could work on that tooth.  His appointment was today.  Well, when Dr. Snead began working on it, he said, "Boy, did we open up a can of worms!"  Jeff spent an hour and a half in the chair while Dr. Snead attempted to clean out the tooth.  There was silver debris from an old filling, the tooth had had a root canal at some point and there was an infection Jeff was not aware he had.  Dr. Snead thinks he may have to see a specialist.  Another doctor?  Why not?  Jeff will have to add another antibiotic to the one he has taken regularly since before his transplant.  Jeff also discussed his jaw pain with Dr. Snead.  There is no evidence that Jeff is grinding his teeth so Tylenol was recommended. 

Last week we heard an adorable human interest story about two young cousins who lost the book they’d been writing together, Rules for Life.  It inspired the title for this blog post (and was a good reminder for Jeff as he headed to the dentist).  Here is a link to the story: http://abcnews.go.com/blogs/lifestyle/2013/01/child-rules-book-returned-to-young-authors/

Other news:  Jeff is considering a third career in child care.  He is itching to ask our young friends, Emily and Matt, if he can borrow their baby for awhile to test the waters.  He will make a super Pop.  In fact, he thinks he would like to be called - not Grandpop - Super Pop! 

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.