Day Zero Plus Sixty-three – Moving Along

Jeff has been eating a little better this week, probably due to the changes in his meds that Dr. Porter made last Friday.  His digestion is still noisy and sometimes dramatic but the diarrhea is a lot better.  One day I thought someone’s cell phone was vibrating but it was just Jeff’s tummy working on lunch.

Dr. Porter says that Jeff is “not doing fabulously” but he is happy with progress in two areas:  his diet/digestion and his kidney function which is “almost normal.”  The report from the endoscopy/colonoscopy was inconclusive for GVHD.

Despite his expanded diet, Jeff lost four pounds this week.  Dr. Porter wasn’t overly concerned about this.  Since there is no overwhelming evidence for GVHD, he thinks Jeff’s diarrhea may have been a drug allergy.  Therefore, he will add only Acyclovir, the anti-viral medication, back into his regimen.  I told Dr. Porter that two of our kids are allergic to sulfa drugs and I wondered whether Jeff could also be allergic to the Bactrim (Sulfameth) that he had been taking three times a week.  We think he was wise to have us withhold Bactrim for another week.  He also told us Jeff’s eosinophils (white blood cells usually associated with allergies) which had been elevated, are starting to drop.

Jeff’s platelets have been, as we like to say, “on the low side of normal” for awhile now but they dropped below normal this week.  Jeff asked, “Why?”  Dr. Porter said there are a few reasons why that might happen:  infection, GVHD, or side effects from Tacrolimus.  Although he isn’t too worried about Jeff’s lower platelets, it is something to watch over time.

Jeff asked Dr. Porter to clarify his response to the question he posed last week, “Can I drive?” since we had come away with two different interpretations of his answer.  Dr. Porter says he is purposefully vague because he fears a patient may have an accident and medical records would show a long list of medications, BMT, a weakened state, and many health issues.  Of course, he would be wearing mask and gloves which advertise “PATIENT” of some kind.  Dr. Porter advised Jeff to drive only short distances, around home.  Maybe he can drive himself to PT. 

On the way home from the Perelman Center, we dropped Kim off at her place and played with her cat, Mr. Maia, for a few minutes and then we headed up I95 to Bensalem for a brief visit with my parents.  Next, home for Jeff’s IV infusion - a process of about two hours - then on to PT.  On the way home from PT, we stopped to see our friend, Jennifer.  What a full day!

Day Zero Plus Sixty – The Popular Guy with the Velvet Hair

Jeff was a popular guy today.  Keith figured he spent at least two and half hours on the phone.   First, his brother, Paul, called.  They had a lengthy conversation with a lot of laughter.  Then his friend, Martin, called.  Another animated conversation.  And then Jeff called Conshohocken Jeff.  They spoke briefly before we had to leave for Jeff’s physical therapy. 

Conshohocken Jeff needs to have the rest of the stem cells required for his transplant harvested directly from his hip, under general anesthesia, but his platelets were too low to do it today.  Harvesting may happen tomorrow, if his platelets are high enough.  He said he couldn’t sit still so he had been working a little in his garden.  He would like us to get together and have dinner when all this is behind us.  Sounds good to me!

For a week or so now, Jeff has been getting a little excited about the return of his hair – on his head, anyway.  He thinks it is coming in “towhead blonde” but I think it looks suspiciously white.  It is very soft peach fuzz which Jeff says “feels like velvet.”  He asks me frequently, “Do you want to touch my velvet hair?”  I have to say it does feel nice.  Today I put a piece of white card stock perpendicular to his scalp in the hopes that I could catch enough strands to make a determination about the color.  Keith thinks it may be brown.  Hmmm…   Stay tuned!

My co-workers met me for dinner tonight.  Great fun!  I told them that I would be able to work tomorrow and Thursday since Keith can now do Jeff’s IV fluids!  On Friday Jeff has appointments so I’ll be off that day.   

100 minus 60 equals 40!

Day Zero Plus Fifty-nine – GI Prep How-To

Keith learned how to administer Jeff’s IV fluids today.  It is liberating to have someone else who can do this.  I took advantage of Keith’s presence to run errands, including picking up an enema “Twin Pack” for Jeff’s prep for his endoscopy and colonoscopy scheduled for this afternoon. 

I might have been better prepared for the day if the letter with instructions hadn’t come from HUP’s Gastroenterology Department so late – by snail mail this morning!  I went to the post office on Friday to pay the $.20 postage due on it but it was still on the mail truck so I came home with no mail.  Of course, at the time I didn’t know who sent something postage-due.  Our mail carrier is on vacation so the mail has been coming unusually early in the day.  If it had been delivered by our regular mail carrier, the letter would not have arrived until after we were on our way to the city.   

One of the instructions said not to drink anything red or orange.  Too late!  Jeff had already had an orange Gatorade, thinking he was being helpful.  A phone call to the gastroenterologist’s office - and much discussion with nurses and the doctor – determined that the tests were scheduled late enough in the day so that the Gatorade would not cause any problems for the doctor.

Jeff remembered that our insurance company would not cover an endoscopy and colonoscopy if they were done on the same day so they were scheduled on consecutive days in October.  Somehow HUP managed to get around that problem – thank goodness!

Jeff had a cruddy day fasting for his tests, driving down to HUP after having had two enemas, the tests themselves, the return trip, and the after-effects of the tests.  It was an exhausting day for him.  I think he felt drugged afterwards, too, and couldn’t decide whether he could/should eat.  He managed toast and part of a banana. 

The gastroenterologist’s preliminary report shows Jeff’s GI tract looks pretty good.  His colon has red spots/erythema which were biopsied along with many other areas along the tract.  Dr. Porter may have results on Friday when we go to see him.  In the meantime, Jeff wonders whether he should continue the BRAT diet.  I suspect so - until his diarrhea stops.  Jeff thought that the changes Dr. Porter made in his drug regimen had had a positive effect over the weekend.  Of course, then his prep began so we don’t know whether his diarrhea would have continued to improve.  Drug allergy or side effect?  GVHD?  We still don’t know.

We heard from Jeff’s walking buddy from HUP today, Conshohocken Jeff.  He left a message on Jeff’s cell phone during the procedure.  Jeff will have to give him a call tomorrow.  His message said he was putzing around his yard.  We’re anxious to know whether his stem-cell harvest was successful. 

Day Zero Plus Fifty-seven - Gas and Grass

Jeff was plagued with gas today.  He wonders whether it was because some of his meds have been stopped.  Tomorrow afternoon he will begin the cleansing for Monday’s procedures.  Hopefully, he won’t suffer too much from that process.

This is a first.  While on our evening walk, a neighbor saw Jeff’s mask and gloves and said, “I see you’re sick.  I’ve been thinking of what I can do for you.  Can you use any grass?”  At first I thought he was referring to our lawn which our next-door neighbors are helping us keep mowed.  Or maybe he meant the new patch of grass over the water line that was replaced this spring.  That strip of grass is looking stressed in this excessive heat.  Then it dawned on me that he meant medicinal grass.  Jeff still hadn’t caught on.  So neighbor “R” said, “marijuana.  You don’t have to worry about any Mexicans being killed in its processing.  And it’s organic.”  We kind of got the impression it was home-grown stuff.  We thanked him very politely and told him that Jeff could have had marijuana prescribed during his hospital stay in March.  Now, wasn’t that nice of our neighbor?  Jeff thinks that he must be pretty hip because marijuana was offered to him. 

Day Zero Plus Fifty-six – GVHD?

We got up bright and early this morning for Jeff’s appointment with Dr. Porter.  As we prepared to leave the house, Jeff blew his nose which set off his sensitive gag reflex which caused him to throw up some of the pills he had just taken and some of his breakfast.  He recovered quickly and off we went – with the basin, just in case.  Kim had come for dinner last night and stayed the night so we delivered her to her apartment in the city and headed to HUP.

On Wednesday we learned that Jeff tested negative for C Diff and that Dr. Porter had ordered an endoscopy and a partial colonoscopy for Monday.  They will biopsy tissue to find out if Jeff has Graft versus Host Disease (GVHD).

When we saw Dr. Porter this morning, he said he wanted to change Jeff’s pill regimen quite a bit to rule out his meds as a cause for his watery diarrhea.  He said to hold two doses of Tacrolimus and start it up again tomorrow night at a lower dosage.  That’s good news and bad news since the smallest dosage pill is the largest in size (home-made by HUP’s pharmacy).  He will now get his magnesium with his IV fluids at a slower rate than we have been using; it may take longer than two hours.  He also said to hold Bactrim and Acyclovir for the meantime.  By the time I made these adjustments in the pill case, Jeff had only two pills to take tonight!  Yippee!

Jeff asked about treatment for GVHD and whether it will be a “life-long thing.”  Dr. Porter said, “I am going to be vague about that for now.”  He did say that the severity and duration of GVHD varies quite a bit from patient to patient and that the typical first treatment is steroids.  He said that if Monday’s test confirms GVHD, he will talk to us next week about some newer therapies. 

I told Dr. Porter we found the test results posted on MyPennInfo.com to be very interesting but, of course, we cannot make sense of most of it.  I asked, though, when we would expect to see normal red blood counts.  He said, “soon,” and that red blood cells are usually the last to recover.  He said Jeff’s kidney issues may also be contributing to abnormal (low) red counts.  I asked about his eosinophils which have been elevated – and rising dramatically – since the beginning of the month.   He said that is the reason he stopped Bactrim – in case Jeff is having an allergic reaction to Bactrim, one possible explanation for the elevated eosinophils.   

Jeff asked whether he could drive (!?).  Dr. Porter diplomatically said, “Well, if you’re tired…” and began to list the reasons why someone might choose not to drive.  When we left the office Jeff said he was glad Dr. Porter said he could drive!  I told him that I’d heard a totally different instruction.  The point is moot anyway.  There is pretty much nowhere he can go except to medical appointments and he needs help anyway so…

I am not even going to get into the umpteen phone calls it took to get Jeff’s cleansing instructions for the endoscopy and colonoscopy.  Sometimes HUP’s departments don’t communicate very well with each other.  By 8 p.m. tonight (Friday) we finally had an idea of what to buy, what Jeff should do on Sunday and Monday to prepare.

Jeff has some PT exercises to do.  He likes to demonstrate how easy they are – shrugging, for example – and tell how much pain those “easy” exercises cause the next day.  He has trouble doing them every day because he needs a day between to recover.  We did manage to go for a walk tonight in this heat but, oh, how nice the air conditioning felt when we got home!

I am getting very clever at serving up the BRAT diet in varied ways.  I fry salt and pepper in oil and then add rice or noodles for a delicious – or at least “edible and nutritious” - meal.  I made a nice egg bread in the bread machine for toast.  I fried up cinnamon in butter and lay bread in the pan to sop up the butter and cooked (and safe) spice.  Served with a lovely orange Gatorade and - whoa, baby!  - I’ll be featured on the Food Network before you can say “Grab the basin!”

Day Zero Plus Fifty-four – The Dude Hates Cancer

Kim has been involved with in The Dude Hates Cancer bowling event for three years – originally in support of her friend, Helen, who is a Hodgkin’s Lymphoma survivor.  This year, her dad’s illness gives her another reason to be involved.  She and her Claus cousins are bowling under the team name, "Bist du Stark" (see Oktoberfest blog entry for explanation of the team name).

Here is Kim’s message requesting support for her 2011 team:

Hello All -

On August 27, 2011, I will be leading a team in the Leukemia and Lymphoma Society's “The Dude Hates Cancer!” charity bowling tournament.  Each team competes for top honors and to raise the most money for the Leukemia and Lymphoma Society.  This is my third year participating, second as team captain.  As you know, my father was diagnosed with myelodysplastic syndrome last fall.  I rely on the accurate information provided by the LLS to make sense of MDS and other types of leukemia.  Please take a moment to click on the link below and consider making a 100% tax-deductible donation to support my team’s goal and the LLS.

 Here's the link to my fundraising page - http://epa.dude.llsevent.org/kloux.

 For those of you who are interested, I am selling raffle tickets for pretty much the coolest prize ever - a package of 26 gift certificates for restaurants in and around Philadelphia, the value totals about $1,700.  That's date night every week for more than six months or a biweekly date night for a year.  Here is a list of the participating restaurants - http://www.thedudehatescancer.com/raffle.shtml

Second place prize is not too shabby either - A $220 gift certificate to five of Philly’s top brunch venues.  The money raised goes directly towards my fundraising totals and the LLS.  Since the raffles are not tax-deductible, I can't sell them through the website.  If you are interested in the raffle, please email or call me directly and I will get you the tickets.

Thanks your support - Kim Loux

Day Zero Plus Fifty-two – RAT Diet

Nurse Paul came this morning for Jeff’s labs, dressing change, etc.  He and Jeff discussed Jeff’s gut trouble and decided he ought to be tested for C Diff again.  There followed several phone calls – Nurse Heather at Dr. Porter’s office, the home infusion pharmacist, the home infusion supply coordinator and the CVS pharmacist.  There were a couple of trips to CVS. 

Jeff has been suffering with frequent bouts of diarrhea and cannot eat much without feeling nauseous or stuffed.  The Gastric Emptying Study done on Friday showed nothing abnormal, so it was decided that Jeff should be treated for C Diff – again.  Meanwhile, a lab culture has been ordered to see if it is, in fact, C Diff that is causing his problems.  If it isn’t, he will undergo a “procedure” to determine whether the problem is Graft Versus Host Disease (GVHD).  Jeff doesn’t want to think about what that “procedure” will entail but he thinks one of the nurses mentioned endo-something so maybe it is a camera-look-see kind of thing.   

We will continue to give IV fluids at home.  Heather suggested the BRAT diet (bananas, rice, applesauce and toast) but Jeff is leery of bananas as they seem to cause problems.  So, he is referring to his diet as the RAT diet.  He asked for cinnamon sugar for his toast and I thought that was a great idea to add a little flavor.  I happily made up a bit of it and served it at lunchtime.  Then at dinnertime when Jeff asked for it again, Keith said, “Can he have cinnamon if it isn’t cooked?”  Drat!  He’s right!  We read about how cinnamon is harvested and, like a lot of spices, it is not processed much.  It isn’t cooked.  I may try cooking some up in a pan with butter and see whether that will spread on toast satisfactorily.  He must not feel too rotten because he asked if ice cream was on the RAT diet, RAIT?

Jeff had a sleepy day today.  He is weak and tired.  Not too tired for our evening walk, though.  He asked me if we could drive a few blocks away from the house for a different starting point.  We have walked two blocks in every direction from our house and he was looking for a change of scenery.  Good idea!  Giblet enjoyed checking out all the different pee-mail messages.  We walked only one block, a long block around the athletic field, returned to the car and came home.  Jeff calls Giblet our “slave-driver” because she never lets a day go by without demanding a walk. 

We have been thinking about Jeff from Conshohocken, our Jeff’s walking partner at HUP.  We have been able to keep in touch with him because he is on the same schedule for follow-up visits as our Jeff.  Last week we saw his wife, Marie, at the Perelman Center at HUP and she told us that stem cells were being harvested from her Jeff in preparation for his autologous stem cell transplant.  Unfortunately, after five days of harvesting, fewer than half of the required quantity of cells had been collected.  He’d already endured a liver transplant and a hospital stay of many months.  I don’t know what steps will be taken next (stranger donor?) but Marie’s Jeff could sure use our prayers, too.

Day Zero Plus Fifty-one – The Invisible Man

I thought everyone might like to see Jeff in his Invisible Man get-up!

Day Zero Plus FIFTY – MIDWAY!

Whoopee!  Jeff is half-way through his 100 days of “Early Recovery!”  I keep thinking about Jeff’s Day 100 and also remembering the 100 Day parties the kids had in the third grade.  Each student brought 100 of something: rubber bands, paper clips, Cheerios, M&Ms, etc. and stations were set up to do activities with the various items.  Day 100 does seem party-worthy but maybe just grilling or going out to dinner will be excitement enough.  

I am happy to report that despite Jeff’s anxiety about the Gastric Emptying Study, he did eat – and keep down - the radioactive eggs.  He says he prayed on it and, since that particular prayer was answered so nicely, he wondered why he didn’t just pray for his stomach to get better.  I told him it wasn’t too late for that.

Our friend, Kathy, is directing a play for the Langhorne Players and her husband, Ken, designed the set.  They graciously invited us to attend a dress rehearsal which would have very few audience members (and, therefore, fewer germs) so that Jeff and I could see their show.  Unfortunately, Jeff began vomiting about an hour before we would have left the house for the theatre and so, of course, we couldn’t go.  Theatre is usually a big part of our summer fun and it is hard to think of all the productions we are missing.  If you are interested in seeing End Days at Spring Garden Mill Playhouse, here is a link - but you must consider inviting me along, if you go:  http://www.langhorneplayers.org/

 In another attempt to bring some normalcy to our summer, we spent a little time poolside at the Rillings’ yesterday.  Jeff lounged, not entirely comfortably, outside and inside.  We shared a DiGiorno pizza (well, those of us who could eat take-out had Dominic’s pizza) to celebrate Judy’s new job.  We will be driving to Philadelphia this evening to pick up the newlyweds from the airport.  That is, if Jeff is up to it, he’ll come along.

For years Jeff has been interested in finding a 1949 GMC panel truck to restore.  Now that he has his nifty iPad, he has searched and found one – in Montana!  For two days I have watched him drool over the photos posted on eBay.  His sons and his brother, Paul, have all offered helpful suggestions as to how he could acquire it and bring it here.  Kerry says he’ll sell his 1973 VW Superbeetle to make room for Jeff’s work trailer in the driveway so that the truck could be stored (and, presumably, restored) in the back of the garage.  We’ll have to think on that since he presently has limited grip and pincer strength that impaired his ability to depress the button on a camera to take pictures at the wedding.  Jeff had his first out-patient PT visit this week so we’ll have to wait and see…

Day Zero Plus Forty-six – Radioactive Eggs!

Bright and early this morning we went to HUP to see Dr. Porter.  The counts that indicate how well Jeff’s kidneys are functioning are still abnormal.  I guess he’ll have to continue his IV fluids awhile longer.  Dr. Porter was especially interested in hearing Jeff describe his gut trouble.  He is concerned that Jeff’s stomach might not be emptying as it should; this sometimes happens in BMT patients.  He says there is medication he could prescribe but he would rather know for sure before adding yet another medication to Jeff’s regimen.  He ordered a NM (nuclear medicine) Gastric Emptying Study which will require Jeff to fast overnight, then eat radioactive eggs and have a radiologist watch what happens.  Dr. Porter warned Jeff that these eggs are pretty nasty.  I made this appointment for Friday morning.  He is dreading it already.

Dr. Porter also adjusted Jeff’s Tacrolimus and instructed us to hold it altogether tonight and tomorrow morning.  That means two fewer pills tonight and in the morning!  Yippee! 

Pop was released from Manor Care on Sunday so we decided to stop at my parents’ house on the way home from HUP.  The house was filled with activity.  Pastor Esther had just left.  Judy and Becky were filling both Mother’s and Pop’s pill boxes for the week, a task that requires an inordinate amount of concentration.  Linda was caring for Pop.  Mother sat in the living room and visited with Jeff and me.  It was good to see Pop at home and check out the track lifting system Harry installed for him.

The next family wedding will be Melissa’s and Josh’s in October.  The young couples’ interest in the 1930s has inspired Nancy to consider having a Learn-to-Swing-Dance party.  When Jeff heard this, it gave him a new topic for a YouTube search, his favorite activity these days.  He has learned how to fell a tree, throw pottery, turn wood, make baseball bats, blow glass (his niece, Elizabeth, is a glassblower) and, now, swing dance!  When he is well enough to try these things, he is going to be busy!  He has watched hawks, domino races, Rube Goldberg-inspired machines and garden train layouts.  Forward any other topic suggestions to: jrlworkshop@gmail.com

Believe it or not, we went for our walk in the heat of the day, late afternoon.  Jeff hasn’t walked more than three blocks at a time yet he set for his goal my co-worker Barb’s house six blocks away.  Keith drove by us as we walked; I knew I could call him to pick us up if Jeff petered out.  Jeff pushed to finish without a rescue and collapsed on the sofa when we returned to the house.  His legs and feet hurt.  He is retaining some water from the IV fluids and he thinks that is why he has pain when he walks.  The air conditioning felt so good.  Giblet was glad for it, too, I think. 

Theresa took a moment from her honeymoon to send us a link to her friend’s photo gallery.  He took some outstanding pictures at the church, including beautiful shots of the bridal party!   https://sengphoto.wordpress.com/

Day Zero Plus Forty-five – “They fly ze peoples to ze moons…”

Today we were back to routine - nurse visit and IV infusion in the a.m.  However, for fun we added afternoon napping to our agenda.  We were both pretty tired from the wedding weekend festivities.  Jeff sneezed a couple of times this morning and thought he’d picked up a cold at the wedding.  It hasn’t developed further so I think he’s in the clear.

 Jeff had tummy troubles and wasn’t able to eat much.  After dinner we decided to try to get a walk in.  We were stopped at the end of our driveway by our neighbor, Greg.  He stopped mowing long enough to get an update on Jeff and to express his anger that Jeff has to go through this.  I think he finds the mask and gloves off-putting.  He probably isn’t alone but we are so used to it that we sometimes forget how it appears to other people.  Greg says, “They fly ze peoples to ze moons and still ze cancer…” 

I visited Facebook more times today than I have in the last three months, I think.  There have been some postings of wedding photos.  Jeff’s talented niece, Elizabeth, got a couple of beautiful shots outside the chapel.  Our friend, Emily, shot some video so Pop can see the wedding.  We will be re-living the day for many days, I think.

Day Zero plus Forty-three – “I told you…”

I am journaling the whole Wedding Weekend Extravaganza which I realize may bore some of my reading audience.  Of course, you may choose to read it or not.  For those of you who can stand to indulge me, here is the blow-by-blow:

We woke up to a warm, sunny Wedding Day!  I sent Keith to the hotel desk to retrieve Jeff’s wedding dinner and wedding cupcakes that I’d prepared at home and which were in the hotel’s freezer.  I started Jeff’s IV fluids and prepped the flushes for after the infusion in case Jeff had to do it himself.  He is squeamish about it so I was pretty sure he would wait for me to return from my hair appointment.  Besides, he’d had a rough night (which Kerry noticed from the next bed but assured us hadn’t disrupted his sleep too much) and his gut was causing him some trouble.  As soon as he was settled and the IV pump running, Kim, Addie and I left for the hair salon where the bride’s mother is a regular. 

We met the rest of the ladies at the hair salon.  Kelly, the stylist assigned to me, was very personable and we soon learned that we each had husbands who’d had lengthy hospital stays.  Her husband’s was a 4-month stay following gall bladder surgery during which a piece of equipment malfunctioned and damaged his pancreas.  He lost 1/3 of his pancreas and, against the odds, lived to tell the tale.  At the time, they had a 10-week old baby.  No matter how bad things get, you don’t have to look far to see someone worse off than you are.  Anyway, after we were sufficiently beautified, Kim left the salon with the bridesmaids to go to the Andrejack’s house.  Before Addie and I left we saw Theresa’s hair-do in progress.  She is a lovely woman, a lovely bride!

Jeff had evidently slept through most of his infusion while we were gone.  It had finished a few minutes before we got back to the hotel.  I unplugged him, flushed his lines, and got myself dressed.  Addie got dressed, too, but Jeff lounged.  He felt rotten.  I offered gentle suggestions that he get ready for the wedding.  I think he was hoping he would begin to feel better.  He refused anti-nausea medicine because he didn’t want to fall asleep.  In my mind I laid out Plan B:  call Dan and ask him to stay with Jeff at the hotel during the ceremony and hope Jeff would be up to the reception later.  Finally, I said, “If you can’t make the ceremony, that’s alright.  Maybe you’ll feel well enough later…”  Jeff’s response was a sharp, “No!”  He got up and got dressed.  We all looked so spiffy that we took some pictures.  When he thought he was ready to travel, we left for the church. 

When we arrived at the church, I dropped Jeff off at the door but there was no one outside I could ask to park my car.  I knew parking would be a problem at 20 minutes before the start of the ceremony.  Kerry had instructed us to arrive much earlier.  Oh, well; it couldn’t be helped.  They might wait for me.  After driving around and finding only permit parking on the street, I found an empty permit-only parking lot but the sign said that towing was enforced all the time, not just weekdays.  I finally found street parking, began feeding quarters into the meter and someone yelled from a passing car, “It’s free on Saturdays!”  Oh, well.  As I walked to the church, Dan called and asked where I was.  He met me on the street and we walked to the church together.  I don’t think I was late but it was too close for comfort. 

I met Jeff in the narthex.  He gave me my wrist corsage and did not make me feel bad about cutting it close.  I stepped into the sanctuary and, out of habit, I slung my sunglasses onto my coiffed head.  Kerry’s friends, the groomsmen, gave me a funny look.  I said, “Oh, did I just put my sunglasses on my head?”  They nodded.  I carefully plucked the sunglasses back out of my hair and put them in my clutch.  You can dress me up but you can’t take me out.  Then I greeted Jeff’s cousin and his wife and called her by her sister-in-law’s name.  Smooth!  I realized my gaff and was powerless to fix it at that moment because duty called.  The bridal party was in the narthex; the door opened a crack and I got a glimpse of Kim and the other bridesmaids, all so beautiful!  The waterworks began. 

Keith was ready to usher us down the aisle.  Although we had rehearsed Keith ushering me with Jeff following us, I told the men I wanted to be flanked by them.  So I grabbed each of them by the arm and began down the aisle.  Maybe I wasn’t blubbering.  I am sure my face was contorted with the effort, though.  Jeff saw the photographer ahead of us and reached up to yank off his face mask.  His bold move empowered me and I recovered my composure by the time we were seated. 

The ceremony was very nice.  Kerry remembered to turn around to watch his bride walk down the aisle (something his father did not do and, so, was warned about).  Kerry and Theresa were both so easy, cool as cucumbers, enjoying the moment.  I did not cry overly much but just enough to make it difficult to read the hymn lyrics.  Jeff and I were both relaxed and happy. 

Father Acri’s homily included a story about a husband who for 40 years gave his wife the heel of the bread.  I turned to look at my mother, seated just behind us, because we have discussed this more than a few times.  The husband gave his wife the heel of the bread despite her not liking it and, after 40 years, she finally said, “Why do you give me the heel of the bread when you know I don’t like it?”  His answer was, “Because it is my favorite piece.”  I had always thought my mother ate the heel because she was frugal and a martyr, eating what no one else wanted.  I learned as an adult that she preferred the heel!

The photographer took all the pictures involving our family first so that Jeff could return to the hotel to rest before the reception.  The bridal party went on to the Capitol fountain for pictures - which I cannot wait to see!  My mother, siblings and their families met us in our hotel room.  Jeff “rested” in a roomful of people and he probably should have had his mask on then, too, but he didn’t.  We had fun!

At 5:30 p.m. I drove Jeff to the Antique Auto Museum which was really just to the other side of the parking lot from the hotel.  Still, we were conserving his energy and the parking lot is on a hill.  Unfortunately, I forgot his special food: lasagna and roasted carrots.  Our friend, Ken, saved the day by both parking my car and retrieving the dinner from the fridge in our hotel room.  Almost as soon as we arrived, the staff asked us for Jeff’s special food.  They were very attentive to his needs. 

Cocktails and appetizers were served in my favorite gallery which meanders from exhibit to exhibit and is made to look like a street.  There is an old gas station and a mock-up drive-in movie theatre and, of course, cars parked all over the place.  Theresa’s young cousins, students at a performance arts charter school in Bethlehem, provided music.  Jeff sat and visited with his cousin, Joyce, up from her home in South Carolina, and his sister, Debbie.  I saw friends, family and spoke with the Drexel engineering geeks, all really nice guys, and their gals.  We began hearing the recurring comment, “This is a great place for a wedding!”  My mother found a version of her first car.  The kids sat at the “drive-in” and watched a movie.  There seemed to be something for everyone and the exhibits facilitated conversation and mingling.  The bridal party, meanwhile, was upstairs in the rotunda.  We went up there briefly for photos with the kids.  I wish I had taken some candid pictures of the bridal party then. 

 

Then we went downstairs to the lower gallery and dinner.  The nearby galleries and photo booth drew people from the main gallery so that there was a lot of movement and mingling.  Kerry and Theresa performed many of the traditional customs – cake-cutting, first dance, bouquet throwing.  Theresa danced with her dad – lovely! – and Kerry and I danced to Jim Croce’s, “I’ll have to Say I Love You In a Song.”  Not too shabby.

We sat with the bride and groom, Steve and Stephanie Andrejack, her Aunt Betty and my mother.  Jeff’s lasagna was plated by the caterers and served with the other meals for our table.  Perfect!  Jeff saw the same perfection when dessert was served.  His cupcakes were served when the cake was cut.  He removed his mask to eat and drink and sometimes forgot to replace it.      

We took some fun pictures with friends in the stainless steel diner at the end of the gallery.  The photo booth in a nearby gallery was fun for young and old alike.  Duplicate copies of everybody’s photo strips will be given to the bride and groom.  Jeff and I were in line for the photo booth during what we were told were the only slow dances the DJ played.  So when the last dance was announced and we hadn’t yet danced, Jeff obliged, even though it was not a slow dance.  I think he had to muster all his strength because he was pretty beat by then.  The young people, on the other hand, did not want to leave the dance floor.  Everyone was having such a good time.

Jeff wished he could have socialized more.  A lot of people came to him, seated at our table in his board room chair which I had called to request last week.  The special chair was a godsend with its wide seat, tall and movable back. 

At the end of the evening, back in the hotel room, he sat on the edge of the bed – hunched over and looking miserable.  I began to rub his back and he said, “I told you I could do it.”  Yes, he had! 

Day Zero Plus Forty-two – Harrisburg or Bust!

Keith asked his dad to cut his hair for the wedding.  In typical Keith-fashion, the request was made Friday morning, before our planned departure for Harrisburg.  Jeff was getting his infusion at the time so the “three” of them went into the bathroom – Keith, Jeff and his old dancing partner, the IV pole.  Keith emerged from the bathroom clean-shaven and hair buzzed.  All set for the big day as Best Man to his brother.

By noon we were off to Harrisburg in two cars, the guys (Keith and Jeff – and Addie, too) to the tuxedo rental store in Mechanicsburg and the girls (Kim and me) to the hotel in Hershey to disinfect doorknobs and surfaces in advance of Jeff’s arrival.  I had hoped Jeff’s energy could be conserved by having someone pick up his tux for him but Kerry insisted that the fit be checked by the professionals.  Of course, Jeff wanted to do whatever the groom wanted him to do.  It turns out he was two sizes smaller than when he was measured pre-transplant.  The store didn’t have his size so they had to drive to another store to get it.  

Then we were off to the rehearsal at St. Lawrence Chapel in Harrisburg.  We met Tom, the wedding coordinator for the parish, and Father Acri, the Andrejacks’ former priest.  We had our first peek at the beautiful chapel, a stunning setting for a wedding.  After Father Acri and Tom instructed Keith on where to seat Jeff and me, we were finished our job and could relax and enjoy watching the young people practice their roles.  Only a few tears escaped but what about the wedding day?  Would I be a sappy wreck?  I hope I don’t blubber.  

Jeff’s sister, Debbie, and her husband, Larry, who were in from Michigan, joined us for the rehearsal dinner at The Cellar in Camp Hill.  We began with appetizers and drinks in the bar.  The restaurant was unexpectedly short-staffed which everyone took in stride.  After all, they kept bringing delicious appetizers and they managed to find a can of soda (they only had diet lemon-lime) for Jeff which he drank with his packaged cheese stick.  We had dinner upstairs in a private dining room.  Jeff ate a chicken dinner we froze for him at home and brought along for the occasion while the rest of us enjoyed such delights as Lobster-Crab Mac and Cheese, Filet Mignon and Salmon.  I hadn’t anticipated how long dinner would last and we did not have Jeff’s evening meds with us.  That was a mistake.  He grew more and more uncomfortable in the chair and eventually roamed the restaurant trying to alleviate his shoulder pain.  I offered to take him back to the hotel but he did not want to leave early.

We returned to the hotel by 11:30 p.m. and collapsed into bed.  I gave Jeff his backrub and hoped it, along with Neurontin, would help ease his pain enough to sleep.

Day Zero Plus Forty – Rainy Day, Exercise, Big Doin’s

Jeff’s mood seemed to match the weather today, a little dreary.  He is a pretty good patient but no one could be a cancer patient and not feel down sometimes.  Dan and I decided that we would be much grumpier patients than Jeff is.  Lately Jeff has been saying, “I am sick and tired of being sick and tired.”  Even though we have been told time and again that this is a long process with good days and bad, I know he worries about his progress.  Those are the times I suggest a little Ativan (anti-nausea, anti-anxiety, mood-smoother) but he is reluctant to take any more pills than are absolutely necessary. 

 

I am almost proficient at administering IV fluids.  This morning Jeff noticed that I hadn’t washed my hands before I began!  I couldn’t believe it!  I wash my hands 100 times a day (not sure that’s an exaggeration) but I forgot to wash right before touching his ports!  Of course, I did wash my hands before continuing.  Holy Smokes!

Jeff felt well enough to don mask and gloves and go to the Claus family 4^th of July picnic at Judy and Mark’s on Monday.  He lasted a long time and the accommodations we made for his food preparation did not detract from his enjoyment of the day.  Harry sprung Pop from the rehab center for the afternoon so he could picnic with us, too. 

I asked Jeff whether I ought to be nagging him about his PT exercises.  He didn’t really provide an answer to my question.  I stopped asking, “Do you want to go for a walk?”  The answer is always a shrug or “no.”  Now I say, “Let’s go for a walk.”   He usually complies.  Yesterday he walked three blocks at one time – a first – and there was an incline on the return trip.  He was winded when we got home.  Today we didn’t get our walk until after dinner due to the weather.  Late in the afternoon I saw Jeff doing his leg exercises without any prompting (nagging) from me.  His arm exercises require my involvement because he can’t tell when he pops his shoulder blade.  The instruction is “quality is more important than quantity.”  The shoulder blade should never pop out.  I rest my hand on it to try to help him feel when it pops.  He will start PT in Yardley next week.

On the bench in the dining room is a growing pile of special food and medical supplies that we have to remember to take with us to Harrisburg this weekend.  Never before has my packing list included “IV pole.”  I realize it will take a lot of planning to make sure that we have everything Jeff will need so that we can all have a good time at Kerry and Theresa’s wedding.  Jeff has been worried about being comfortable and alert at the rehearsal, rehearsal dinner, wedding and Sunday luncheon.  However, he is very determined to meet every one of his social obligations. 

Jeff’s sister, Debbie, is so excited about the wedding that her daily calls to check on Jeff include reports about her clothes for the festivities, choosing the route from Michigan and packing.  She and Larry will have a head start; they leave their home tomorrow for the trek out here.  Our family is ready to party!

Day Zero Plus Thirty-five – A Full Day’s Adventure

Jeff did really well at the Perelman Center today.  Silly us; we thought we would have hours to kill between his 11 a.m. and 3:30 p.m. appointments.  Not at all!  Jeff was kept pretty busy.  

A physical therapist evaluated him at Dr. Porter’s office and gave him many exercises and suggestions for minimizing the pain in his shoulders, arms and hands.  (I hope he cooperates and follows her instructions.)  She ordered outpatient PT in Yardley.  Then Jackie, the transplant coordinator/nurse practitioner, checked him and his latest labs.  He is doing pretty well, with some of his counts in the normal range.  Because his treatment can harm organs, some of the many things they monitor have to do with organ function.  Jackie ordered IV fluids because his counts indicated the kidneys needed help.  He was sent to the chemotherapy side of the office for a bag of fluids plus a bag of Zofran to combat the nausea he has been having.  He will continue to get Zofran with his IV fluids.  Jackie said she was doing Jeff a favor by not adding another pill to his regimen.   

Jackie ordered two weeks’ worth of IV fluids and I wondered what we would do about getting a nurse next weekend in Harrisburg.  Jackie looked at me and smiled.  I said, “Oh, that would be me.”  Yes.  Add “administer IV fluids” to my skill set!  Tonight a pick-up truck pulled into the driveway with an IV pole and two cartons of supplies.  A nurse will come tomorrow to instruct me.

Jackie also solved the mystery of the 3 p.m. appointment for “Chemotherapy” in “chemo chair #1.”  Often BMT patients need blood or fluids so when a patient makes an appointment with Jackie, an appointment in the chemotherapy (infusion) area is automatically made.  Sometimes the slot is needed, sometimes it isn’t.  Jeff spent his hour during infusion under a blanket, taking a nap.  I met Kim and we went to the café for lunch.  We tested some of the furniture in the atrium and then we went back to the infusion area to check on Jeff.  Still sleeping.  Jeff woke up when his infusion pump beeped to indicate completion. 

Then off to radiology for an MRI.  Ever since Jeff’s metal-in-the-eye incident, we wondered whether there would be a problem with Jeff getting an MRI.  He had to disclose that he’d had metal removed from his eyes but there was no hesitation about doing the job.  Jeff told the technician that he wished he hadn’t already had a nap.  She said, “Oh, yes.  Too bad.”  However, when the machine turned on Jeff realized that a nap would not have been possible anyway.  Bum, bum, bum, bum, chirp, chirp, chirp, whirrrrrr, and many more sounds provided a soundtrack for Jeff's adventure.

We left the city around 4:30 p.m., dreading rush hour traffic.  It wasn’t too bad at all.  On the way home, Jeff seemed pleased that he lasted the day.  Maybe it was a sort of dress rehearsal for next week’s wedding festivities.