Change of Plans

At church on Sunday there was a fair amount of hacking and coughing going on.  We decided it would be best to skip crowded church services with lots of kiddies.  Jeff's white blood cells are too few to contend with those little darlings with their sneeze spray and germs brought home from school.  December 26th will be a low Sunday; we'll go then.  Keith was supposed to come home this weekend but he has been doing nothing but sleeping and taking finals most of the week.  He is being treated for pertussis and I told him he couldn't come home until he isn't contagious.  He has to be out of the dorm by 3 p.m. Tuesday.  He should be well by then.  We love you, Keith, but you can't come home yet.

It had just occurred to me that we probably would have a quiet New Year's Eve and not make any plans when Kathy called to invite us to their house for dinner and game night.  She and Ken had decided that instead of a big bash on New Year's Eve, they wanted to invited Jeff, me and another friend for that evening.  Kathy suggested 8 p.m. and I told her it isn't likely Jeff will last until midnight.  She said, "How about 7 p.m.?"  We settled on 6 p.m. and although I feel a little guilty that we'll probably ditch them before The Ball falls in Times Square, I know they will understand.

Our Annual Christmas Caroling Party with the Milionis family was last night.  Annie called in the morning to very nicely, very politely un-invite us.  She said many of her guests were recovering from colds, Gerry was feeling like he was getting sick and she would feel terrible if Jeff caught anything from the carolers.  I told her we'd get in the car and track them down on their route to listen and join their singing.  She said they had already decided that if we couldn't come, they'd carol at our house.  I asked if it would be alright if we sang along since Jeff has been warming up his voice for the occasion.  Four carloads of carolers arrived around 8:30 p.m.  They sang one carol then they took our requests.  Jeff asked for "We Saw Three Ships" and I wanted "Here We Come A-Caroling."  Another tune or two and off they went, leaving us with hugs from Annie and Pete and a loaf of Annie's sausage bread, Jeff's favorite dish from the annual caroling party buffet.  The group never stayed at one house so long.  We couldn't make out their faces because the spotlights on our house illuminated us but made it impossible for us to see them.  We did, however, recognize some of the lovely voices.

It has been really nice having Jeff around more to help with the cookie baking.  He was stirring the oats and chips into our Oatmeal Scotchies when he suddenly stopped.  He was pale and looked surprised.  I asked what was wrong.  He said, "I have no blood in my arms."  I took over the job of stirring.  He had noticed that the blood drains from his arms quickly when he is working with his arms overhead but I guess he didn't expect to have that trouble while cookie-baking!  It is a similar feeling, he says, to mixing an 80-pound bag of cement.  So if any of you are lucky enough to taste our Oatmeal Scotchies this Christmas, I hope you appreciate the difficulty involved!

Quick Update

Jeff's last treatment of Cycle 2 was on Tuesday, December 14th.  Jeff feels really good (a modified "really good").  We hope he continues to feel "really good".  He is tired at night.  He has some bruises and his tummy is pretty red.

He says it feels surreal.  "Everything's happening and you're living it but...  I don't know..."  I know what he means but I don't really know how he feels.

He has been able to work most days this month.  Christmas week should be his best week.  Treatments start up again on January 3rd - the day before his and my Mother's birthday.  I told him his treatment cycle is not a month like the doctor told us it would be but rather a "cruel month, like a woman's menstrual cycle - not 30 or 31 days but 28."  So when he left the house for treatment, he told me he was going to "get his friend today."

Oh, Nuts! and the Irish Dude

December 12, 2010

Month 2, week 1 is going fairly well.  We have noticed Jeff’s hair texture is changing.  He is aware of his injection sites if he bends over or if Giblet climbs across his belly.  The nurses are trying to avoid injecting him in the same spots from day to day and that helps a lot.  Jeff worked each afternoon and crashed in the evenings except f or Tuesday when we saw the specialist at Penn.

In September when he had the colonoscopy, Jeff told the gastroenterologist that he was afraid he was going to be told he could no longer eat one of his favorite snacks – nuts.  The doctor assured him that there was no reason to avoid nuts.  On Wednesday night Jeff was looking for cashews but when I gave him the bag, he left them alone.  Finally, he admitted they held no appeal for him at all!  Weird!  Well, of course, that meant he had to have ice cream instead.  Oh, well.

One of the nurses at the Cancer Center had said there were a couple of other guys being treated for MDS but they were never there when Jeff was there.  On Friday, Ken L. took Jeff for his treatment.  When Jeff was getting Vidazzled a man with a heavy Irish brogue came in and said, “You have what I have!”  Vidaza is a “disease-specific drug” so that if you are receiving Vidaza treatment, then you have MDS.  Jeff was glad to finally meet a compatriot.  Marty was diagnosed after symptoms were more obvious than in Jeff’s case.  Marty was not able to dance all night as was his custom.  His doctor told him to get someone to clean his house and cook because he isn’t supposed to do anything.  He will have his transplant quite soon.  Jeff left the Cancer Center feeling he is better off than poor Marty.  Ken, who is better off than either of them, was a little shocked by Marty’s story. 

Jeff gave away a customer this week because he will not be able to do the job she needs done anytime soon.  He says he has finally admitted that he had better not take on any big jobs right now.  His customers are really great people, though, and most of them are willing to wait for their custom work and may ask him to do simple repairs in the meantime. 

Prayers, please, for a sibling match to Jeff’s bone marrow and, also, please pray for “Maria, the Matchmaker,” the woman who coordinates the matching at Penn. 

The Bone Marrow Matchmaker

December 7, 2010

Kim, Jeff and I visited Dr. Porter’s office at the University of Pennsylvania today.  While sitting in the waiting room, Jeff noticed a feeble old man being wheeled towards the examination rooms in a wheelchair.  Later he came out pushing the wheelchair.  Jeff took that as a good sign!

When it was Jeff’s turn, we were led down a long hallway to an exam room.  We all noticed right away that Dr. Porter’s resident, Brett, is ever so cute!  Brett took some history and attempted to determine what we understood about MDS and to learn what we had already been told about why we were there – a bone marrow transplant.  When Brett asked about Jeff’s mood, what a joy it was to give him high, high marks for attitude!  He noted all of those things – and the evidence of a good support system - on the computer for Dr. Porter and answered some of our questions; others he deferred to Dr. Porter.  Then he went down the hall to discuss Jeff’s case with Dr. Porter.  Dr. Porter was already familiar, having consulted with Dr. Kennedy to determine a treatment plan. 

While the three of us we were waiting in the exam room, Jeff brought up his hair which so far has not shown any sign of thinning as a result of the Vidaza treatment.  He recalled that his children said they would shave their heads if he should lose his hair.  I looked over at Kim, with her gorgeous long locks, and said, “Oh!  I didn’t know Kim offered to shave her head!”  Kim said, “Neither did I!”  We all laughed, just as Brett returned with Dr. Porter.  Dr. Porter said something about our having fun, shook all of our hands and prepared to get down to business.

His demeanor was very, very serious.  He took his time explaining the disease, the prognosis if left untreated (a year or less; Thank God for poison ivy.) or if treated with Vidaza (six months or six years depending on Jeff’s response to the drug) and transplant (if he survives the treatment, he might be expected to live another 40 years).

The transplant is, of course, the only good option.  It is very, very risky business.  During the first week in the hospital, high doses of chemo and radiation would be given to kill all his bone marrow cells – good and bad.  This process could potentially harm organs: heart, lungs, liver, kidney.  Then the transplant would be given and Jeff would be monitored for infection and Graft vs. Host disease (for which there are good treatments).  It would be another four weeks or so in the hospital and would take another year before he would feel normal.  Dr. Porter said to think of it as one lousy year followed, hopefully, by another 40 good ones.

The possibility of a mini-transplant (reduced intensity is another one of its many names) was discussed.  The advantage would be that less chemo and radiation would be given, possibly sparing the organs.  There is no good data yet on whether this treatment is any more or less successful than the traditional transplant.  MDS could recur.  

Dr. Porter seemed to want to do the transplant sooner rather than later, testing Jeff's bone marrow after four months of treatment (not six months as the Vidaza literature says is typical).

Jeff wanted to know whether he would have to see his family and friends through a glass wall while in the hospital.  Dr. Porter assured him, “No.  Unless there is someone you don’t like.”  He said we will have to wear gowns and masks. 

Jeff had blood drawn for his HLA typing.  We were given the number for Maria who will arrange Paul’s, Debbie’s and Greg’s HLA tests.  Pray for a match!  Thank God for siblings willing to fight their aversions to needles for the cause!

Power of Prayer

Jeff has friends, family and prayer groups on the job praying for him:  my coworker, Pat's, prayer group and 5-year-old Liam and his family in East Aurora, NY, and Tracy and Bob in Colorado and Lissa's family in California, my siblings and Jeff's cousins.  He is on the prayer lists of a few churches including our own, my mother's and Morrisville Prebyterian Church where Jeff has many friends.  Many, many people have expressed their love and concern and offered their prayers.  Others have offered help in other ways.  Some have offered help to Kerry, Kim and Keith.  We don't yet know what we will need but, oh, what a team Jeff has behind him!

Demographics:
People are praying for Jeff in CA, CO, GA, MI, NJ, NC, NY, PA, VA.
They are Baptist, Buddhist, Catholic, Christian Scientists, Hungarian Reformed Church, Jewish, Lutheran, Methodist, Presbyterian, Russian Orthodox and Unitarian Universalist.

Timing of Transplant

 November 22, 2010 - Jeff saw Dr. Kennedy for his weekly check-up.  Jeff asked about the timing of his bone marrow transplant.  Dr. Kennedy guessed that Dr. Porter might want to do it in about a year's time (1 to 1 1/2 years, maybe).  Jeff's platelets were very low so the drug is doing its thing.

Our New Normal

November 20, 2010 - We went to Kim's to play with her new kitten, Maia.  On the way, Jeff commented about how much easier things seem now than they did just two weeks ago.  He is absolutely right.  I had cried for about a week after the diagnosis and now, it's alright somehow.   He still occasionally looks distant, introspective, and I still occasionally weep but we are adjusting to our new normal.

The Last of the First Treatments

November 16, 2010 - The nurses at the Cancer Center all knew it was the end of his first treatment week and commented about it.

Questions answered

November 15, 2010 - We saw Dr. Kennedy before treatment and Jeff's blood was checked again.  When we told Dr. Kennedy that we had brought a list of questions, she sat back in her chair, got comfortable and answered all of our questions thoroughly.  The list was comprised of Jeff's questions, my questions and Kim's questions - all different questions reflecting our different perspectives. 

Jeff said that he'd heard that a bone marrow transplant would require a month in the hospital.  Dr. Kennedy said it is a "very rough four to six weeks in the hospital, after which you feel a lot better."

Radioactive like Spiderman

Everything that comes out of Jeff's body smell chemical-y.  He wonders whether he could light his farts on fire.  Oh, brother!

My friend and co-worker, Julie, says Jeff is "radioactive like Spiderman."  

Home Improvement?! Really?!

November 13, 2010 - Wouldn't you start a concrete home improvement project if you were receiving cancer treatments?  Word got out that Jeff was planning to rip out the apron of our driveway, sidewalk and curb.  Miraculously, helpers arrived to help with the heavy work.  Mark, Kerry and our neighbor, Paul took turns with the jackhammer.  Nancy and Ken brought nourishment for the troops and Judy and Theresa kept me company.

Dread and Pain

November 12, 2010 - Jeff is starting to dread the treatments.  This is the fifth day and the nurse was running out of fresh territory around his belly button.  She injects in the same spot as Day 1.  By that evening the injection site was painful, "like a brushburn" Jeff says.  It is swollen and bright red.  We clothes-pinned his shirt up off his belly because his T-shirt hurt.  Fortunately, he has the weekend off and can recover some. 

Jeff is Vidazzled!

November 8, 2010 - Jeff's first treatment at the Cancer Center at Aria Hospital, Torresdale. 
Jeff's drug is brand-named Vidaza and would be administered through injections; 3 injections given all at once, every day for seven weekdays in a row, a cycle which would repeat every month for six months.  Jeff decided that if it was something he was going have to do that frequently, it ought to have a fun name.  He calls it "Vidazzle."  Jeff's prayer has changed from "Thank you, Lord, for poison ivy" to "Vidazzle me, Lord."

I accompanied Jeff on this first visit and we were very nervous newbies.  The nurses were competent and explained that I would never be able to administer this drug at home as Dr. Kennedy thought might be possible.  The drug is too toxic and must be mixed under an exhaust hood.  It is very expensive so this mixing doesn't happen until Jeff arrives.  Jeff was given Zofran, an anti-nausea medicine.  Hereafter, he would take it at home on the mornings of his treatments.  A prescription for another anti-nausea medicine was given so that he can take that in between doses of the Zofran.  After the Vidaza rested a bit, Jeff received his first three injections in his belly and we were free to leave.  Jeff drove home (the nurse said he could) but he had a terrible headache on the way home.  He spent most of the day resting and sleeping.  He was a little nauseous but did not take any more of the anti-nausea medicine.  Giblet enjoyed having Jeff lay around with her.  

I thought about making a paper chain - like we did for the kids to count down to Christmas - to mark the treatment days remaining.  Instead I made a grid of six rows of seven columns to X off each treatment day.  I headed it "Vidazzle me, Lord!"  Jeff marks an X after each treatment.

November 9-16, 2010  Nancy, Judy and I took Jeff to some of his treatments this first cycle.  I felt better knowing Jeff had company for the 30-minute drive and it gave Judy and Nancy a way to help Jeff and a chance to see the Cancer Center.  I was comforted by the competence and compassion of the nurses there
 and the way the 20 chairs in the treatment room were arranged for efficiency.  I hoped Judy and Nancy would feel the same way.

Jeff worked short bits of time on some days and slept a lot.

Jeff's blood is checked every four days during treatment and every week during the first month.   His white blood count was adequate for hosting Thanksgiving dinner.  Goody!  If his counts are too low, he will receive a blood transfusion.  This would take an extra couple of hours at the hospital next to the Cancer Center.

Oktoberfest!

November 6, 2010 - Oktoberfest, Cannstatter Volksfest-Verein, Academy Road, Philadelphia, PA.
The annual Rilling celebration of Oktoberfest included most of the Claus siblings and cousins.  It was the first time since the diagnosis that we saw family and it seemed as if they were looking to us to know how to be.  We were still in shock and did our best to be, I don't know...  accepting?  Nancy couldn't hug Jeff because she might cry.  I suspect others of our gang suffered the same fear.

I was in the ladies room when The Chicken Dance began.  The family hit the dance floor and Nancy worried that I would miss this very important part of the evening.  I made it to the dance floor in time!  Dancing with the family felt like a dance of solidarity.  Powerful, that Chicken Dance!

Jeff's quest for the title of Strong Man at Oktoberfest was once again put to the test.  He was reluctant to participate since he wanted to be assured of a win.  Last year he'd come in second but the score sheet was misread and another man was announced as the second place winner instead of Jeff.  He was given a belated prize and an apology but no announcement was made of his success.  He wanted to be publicly acknowledged for his strength.  Bist Du Stark?  Yes!  This year he held first place until late in the evening when another man held the pitcher of lead shot for one second longer than Jeff and stole first place from him!  Still, he was the man to beat and Keith made sure the organizers of the event saw his name and time, 3 minutes and 45 seconds, by drawing a star next to his dad's name.  Keith took first place for the under 21 age group.  We had two strong men to celebrate.  When Jeff's name was about to be announced, the cousins all began a drum roll on their table.  The love and support was palpable.  Awesome!

Breaking the News to Friends

November 5, 2010 - Our good friend, Jennifer, returned our call around dinnertime.  Jeff invited her to dinner, an invitation she was delighted to accept since Dan was away on business and she was headed out on errands.  She came into the house gushing how happy she was to be having dinner with us.  I apologized to her, telling her that we kind of got her here on false pretenses.  As I kept busy preparing dinner, Jeff told his tale starting from the trip to the doctor's office for poison ivy.  We managed to eat dinner, not my best effort but it was "edible and nutritious" and we talked for three hours.  When she left she lamented that we left her with the job of sharing the news with Dan.  I suggested Jeff call Dan himself since Jeff is so good at sharing the news.  She said she would do it.  That was going to be a difficult phone call, we knew.

A Fun Disease

November 4, 2010 - Jeff said he wished he had gotten "a fun disease.  One the doctor would say, 'Oh, you're going to have to move to Arizona.'"  That evening while surfing the web in search of MDS studies and Vidaza information we found out that one of the Mayo Clinic sites where MDS trials are done is in Arizona!  We laughed.

Hugs!

November 3, 2010 - Jeff went next door to share the news with our neighbors, Paul and Wendy.  Wendy is a cancer patient as well.  When he left their house, Wendy hugged Jeff, the first hug he had gotten since the diagnosis (except from me, of course).  He came home and shocked me with the report of his "first hug."  While I had been embraced and touched all week by friends and coworkers, he had been sharing his news with only nods and handshakes in response.

November 10, 2010 - I worried about how the kids were doing so I sent an email with a subject line, "Chick Check."  It read, "Mother Hen wants to make sure her chicks are alright.  Are you?  Here is a digital hug from me to you.  I am hoping for one in return."  They each responded in their unique ways, Keith stopped by my office to offer me a real hug.  Kerry sent a digital hug.  Kim's reply said, "peep, peep, cluck!  i am sorry i can't hug you, my wings are too small." 

The Diagnosis

November 2, 2010, Yardley office -  Dr. Kennedy told us Jeff has a "very serious" diagnosis:  5q- Syndrome, Myelodysplastic Syndrome - Refractory Anemia with Excess Blasts.  It is incurable.  It is not Leukemia but may turn into Leukemia.  She patiently reported numbers - his blasts, for example (18%) - and their significance.  She told us that Jeff's case is "a puzzle," because this disease is usually seen in old men who had been exposed to benzene or radiation.  Jeff's counts are like those of someone who has had the disease for many years and yet Jeff's blood was normal two years ago when he had a physical.  We told her about Jeff's first career in drycleaning where he used perchlorethylene, not benzene, and the second-hand smoke he had been exposed to at the drycleaners and growing up.  She was not convinced that perc or second-hand smoke would have been the culprits but admitted there really is no way to know.  Jeff and I both did pretty well in hearing and processing this dire news and still remaining receptive to the information she continued to give us.

When the conversation turned to treatment, she said that she had consulted a specialist at the University of Pennsylvania, Dr. David Porter, who spent a lot of time with her on the phone discussing Jeff's case.  Together they came up with a plan which would include drug therapy - azacitidine - through her office which would only begin once we had made arrangements to see Dr. Porter at Penn.   Dr. Porter would do Jeff's bone marrow transplant which Dr. Kennedy told us is "certainly in your future."  She said the goal of the treatment would be to "turn back the clock."  She asked whether Jeff had siblings and winced when he told her they were all older than him.  Dr. Kennedy gave us a link to the Leukemia Lymphoma Society website and encouraged us to read nothing online that wasn't very recent.  She also warned us that some of our loved ones will want to recommend oncologists they'd heard about and explained the reasons she was recommending Dr. Porter for Jeff's particular diagnosis.  We went home laden with brochures, pamphlets and anxiety.

That night we called our families to share the news.  Jeff spoke with his siblings, laughing as he asked them for their bone marrow.  Paul, Debbie and Greg all graciously agreed to be tested for a match to Jeff.  Meanwhile, I spoke with my sisters giving them "just the facts ma'am" until they expressed their concern and then I would sputter and cry.  Jeff held my hand as we each held phones to our ears.

October 2010 - The Long Wait

After the results of the blood work were received by Dr. Kennedy, she called to schedule a bone marrow biopsy.  With the results of the biopsy, Dr. Kennedy called Jeff to ask us both to visit her office the following week.  Jeff returned to New York to finish up the kitchen job.  That was a long and stressful wait. 

September 2010 - The Puzzle

The gastroenterologist recommended an endoscopy as well as a colonoscopy and remarked that Jeff's blood counts were "a puzzle."  The two procedures were done on subsequent days because insurance doesn't cover both on the same day.  Neither showed anything abnormal and he was referred to a hematologist (count: doctor #3).  Jeff went to East Aurora, NY, for two weeks at the end of September to install the kitchen cabinets he spent the summer building.  When he returned he visited Dr. Kennedy for more blood work.  He quipped, "They tell me my body isn't making enough blood so what do they do?  Keep taking more!"

August 2010 - Poison Ivy

Jeff got a good case of poison ivy working at a customer's house on Canal Street in Yardley.  He complained about having to visit our family doctor because Dr. Peck is so infuriatingly thorough that, "He'll do an EKG, draw blood and keep looking until he finds something wrong.  Then four doctors later..."  Jeff decided not to wait out the poison ivy since his eyes were swollen nearly shut.  One week after that visit, Dr. Peck called him back to the office to discuss the results of his blood work.  His red blood cells were enlarged and too few, the white cells and platelets were also abnormal.  The blood work was repeated with similar results.  Since Jeff had not yet had that nice test for 50-year-olds, Dr. Peck sent him for a colonoscopy.