Day Zero Plus Ninety-eight – Big Toe Trouble

Somewhere along the line we learned that cancer patients get chemo lines on their fingernails.  At one point Jeff had two – one from his March in-patient chemotherapy and another from his pre-transplant conditioning in May.  The March line has grown out and his May line is half-way up the nail. 

Awhile ago Jeff wore newish sneakers when we went for a longish walk.  That resulted in a bruise on the side of his big toe.  This week that same toenail lifted off the nailbed and became infected.  This was a source of some concern so Jeff called Dr. Porter’s office to report the problem.  Nurse Heather said that Jeff had done exactly what he should have done – apply antibiotic ointment and a Band-aid.  We are to watch for fever which we do anyway by taking his temperature at least two times a day.  It looks like he will lose the toenail so this may continue to be an issue.

It seems so silly to report an infected toe.  It reminded me of Kim’s wart report that she “filed” with her friend, Ali, when they were going to school in different cities.  Kim periodically sent Ali photos of the wart on her thumb so Ali could continue to watch its progress.  Ew.  I have seen some cancer blogs which include photos of the patient’s bald head, skin flaking off and various other physical changes.  I can’t bring myself to do that.  Maybe that is because I am not the patient.  If you want to see gross pictures, you might Google “GVHD toenail images.”  No URL is provided here. 

I have noticed that the week or two before significant events in Jeff’s treatment are particularly stressful for me.  Next week’s bone marrow biopsy is weighing heavily on me and the anxiety is settling in my jaw.  Evidently, I clench my teeth.  Chewing gum helps a little.  My concentration is affected both at work and at home.  Paying bills has become difficult and I worry about money even though that has not been an issue.  A visit to my sister Judy’s house tonight provided some relief – laughter really is the best medicine – but I worried that I wasn’t good company. 

Jeff, on the other hand, seems to handle these periods with much less anxiety.  I’d like to borrow some of his Zen.  Once again, because we tend not to have simultaneous freak-outs, we complement each other very well. 

Hair-watchers may like to know the velvet tresses are about 5/8” long and still chameleon-hued: blonde, gray, brown.  Jeff now weighs 196 pounds for a total loss of 37 pounds.  Tonight he had an “illegal meal,” a take-out Philly cheesesteak.  So far, so good. 

Day Zero Plus Ninety-five – Power On!

Our power was restored at 2:30 a.m. today.  Last night we showered at Ken and Kathy’s house.  Kathy graciously performed a mini allo-cleaning in her master bath and set out hotel soaps and shampoos for us – all very welcoming and luxurious.  Jeff said the shower was so fancy he couldn’t figure out how to turn it on.  He tried to instruct me before it was my turn.  And Kathy showed me how to use all the special squirty things and rain showerhead but once I got in there, I forgot completely about the extras and took a regular-old shower.  Ken and Kathy also took some of our frozen foods to store in their freezer.  We learned their lockbox keypad number so we can get our food when we need it but we could actually sneak in and try out that fancy shower another time!

Jeff was happy to see Nurse Galina yesterday morning.  The home infusion nurses usually call the night before their visits to give their ETA.  Without electricity, though, our landline (VOI) wasn’t working.  We tried calling their number from our cell phones but we got a recording saying, “We are experiencing unusually high call volume.  Unless you are having an emergency, call back later.”  Galina guessed the problem, of course, and came without having reached us by phone. 
Jeff has high blood pressure readings fairly regularly and has a flaky face and body.  He spends what he considers a lot of time with his “product” or “lotions and potions” in the morning.  Sometimes he calls his GVHD medicine and moisturizers his “make-up.”  

I emailed the transplant coordinator, Jackie, to ask whether Jeff could enjoy – or at least try – grilled food for the Labor Day weekend since Day 100 is Sunday.  She said “yes!”  Oh, boy! 

Day Zero Plus Ninety-four - The Dude Must Go On

Many thanks to all our friends and family who have checked in to see if we have everything we need after Hurricane Irene.  We have not had power since Sunday at 1 p.m.  I am blogging from a computer in the library at work.  Keith is at home, keeping the generator going for our refrigerator which contains Jeff's food, of course, and also his IV fluids.  Keith is also busy keeping our sump pump - as well as a few of our neighbors' pumps - going.  One neighbor offered to give us gas from his vehicle to run the generator if we ran out - a very generous offer at today's price of gas!  So far, we have not had a problem procuring enough gas and we are being conservative with its use.  Maybe we'll have power restored by tonight.  If not, we may have to shower at a friend's house tonight.

Hurricane Irene did not keep our young people from The Dude Hates Cancer bowling event.  Organizers moved the after-party to the bowling alley and cut the evening short.  All of the cousins got home safely although Mark had to rescue the Rilling gang due to car trouble.  We have asked Kim to guest blog a first-hand account.  Kim has been invited to guest blog on three different blogs this week so we may have to wait for her post a little while.  I can tell you that the Claus cousins won the Spirit Award!  The team received support from many of our friends and family.  It is heartwarming to see people express compassion in this meaningful way.  Here's hoping for a cure for cancer very soon! 

Day Zero Plus Ninety – This Dude Really Hates Cancer

Kim is doing a fabulous job managing the Bist du Stark bowling team for The Dude Hates Cancer bowling event.  There are only two days left to make a donation to the team!  Use the button on the right hand margin to link to the team’s page.  Look for pictures of the cousins in their awesome bowling shirts which we will post soon after the event.
 
Jeff has come to the conclusion that there is nothing magical about Day 100.  It is a significant day in terms of post-transplant recovery but if he doesn't feel well, he still won't be able to eat or enjoy grilled food, for example.  Wouldn't it be lovely if there was a “Day 100 Switch” which rewards the patient for enduring 100 days of restrictions by easing nausea, curing fatigue and taking away nerve and muscle pain.  This dude really hates cancer.

Day Zero Plus Eighty-nine – Grapes Day 2

Jeff isn’t supposed to eat jelly that is not commercially prepared.  He enjoyed smelling the grapes as they were processed and is looking forward to the day when he can take a chance with Keith’s jelly.

I told Keith he has earned the right to use or give away his grape jelly.  If you want some, you will have to be very, very nice to Keith.  He endured many bug bites, an earthquake (which he actually did not feel), and a few burns to produce his lovely jelly.  He put up “only” 26 jars so only his top tier friends will taste the sweetness.  Of course, now he needs to do some research to find out why the produced juice varies in color from one batch to the next.  Perhaps he will keep a jar aside for next year’s Grange Fair!    

Here are some pictures of the fruits of Keith’s labor.  He wants everyone to know that none of these pictures shows the entire harvest.  

Day Zero Plus Eighty-eight – Did You Feel It?

Jeff called me at work to tell me that he was resting in the guest room when the bed began shaking.  He thought that our little 18-pound Giblet was pushing on the bed.  He realized the dog could not have been pushing that hard.  Then he noticed that the chain on the ceiling fan was swaying.  Then the full-length mirror began to rattle and Giblet left the room.  He realized it was an earthquake!  He got up and stuck his head out the back door to ask Keith, who was harvesting grapes, “Did you feel that?”  Keith said, “What?”  And there was his answer.

Most of my co-workers felt the quake; Linda and I did not.  Some departments in my building – not mine - decided to evacuate for awhile.  There was a lot of excitement and an official notification from the university.  About 10 minutes after the tremor, I began to feel odd, a combination of an atmospheric pressure headache and motion sickness.  When I mentioned it, Linda said she had also begun to feel strange.  Sherri felt queasy, too.  I was very disappointed that I didn’t feel the quake.  I must have rolled my office chair just as it hit.  Julie understood my disappointment, knowing how much fun I once had in a Colorado dust storm.

Keith gave my mother a tour of our yard yesterday and showed her our grapes which were ready for harvesting.  He decided he would help us by processing the grapes himself.  He asked lots of questions about making jelly and freezing juice.  I bragged to my co-workers about Keith’s industrious efforts with the garden and grapes.  When I got home today, I was distressed to see a bumper crop crowding the kitchen and Keith up to his elbows in grapes.  He had picked grapes off and on all afternoon and was just beginning to process the fruit.  I knew what that meant.  I would be helping him deal with the fruit for many hours.  He felt badly about that and admitted he shouldn’t have brought in the entire harvest at one time.  However, I know how addicting it is to pick grapes.  Once you start, you are committed to finishing the job.

Keith insisted Jeff and I go for our walk while he stayed home and cleaned grapes.  We passed our friendly neighborhood ice cream truck driver who offered a rendition of the Easter Bonnet Song over his truck’s sound system.  He never disappoints!  When we got back home, I helped Keith clean, sort and crush the grapes, then hang the cheesecloth bags of pulp.  He was chattering away and I was so tired I was not very good company.  Keith sent me upstairs with Jeff’s evening meds and suggested I spend time with Jeff.  There is more to do tomorrow but I can see Keith is competent.  He is very aware of how clean we have to keep the kitchen and does a good job of disinfecting the counters and sinks every day.     

We received, a little belatedly, some post-transplant resource materials from the National Marrow Donor Program.  There were booklets for both the patient and the caregiver.  On Sunday, Jeff and I read to each other, a little tongue-in-cheek, from our respective booklets.  Jeff read that the patient has to come to terms with the fact that, “you may not ever be able to do some of the things you used to do.”  Jeff said, “Amy, I might not ever be able to do wash again!”  Nice try, honey!  Jeff was surprised to hear that guilt was one of the feelings the caregiver might feel. It was actually good to talk about some of the things we read about, even though we thought the materials came a little late. 

Jeff had a ring around his collar last night.  I stared at him, trying to make out why his tee shirt had a 6” whitish dusty ring around the neck.  I began to say, “What is that?” and suddenly realized it was his skin, flaking off of his face and neck.  He is itchy with GVHD rash.  Some areas have tiny red dots like a heat rash, some areas have welt-like reddish bumps and lumps, and other areas are very dry and flaky.  His “lotions and potions,” prescriptions and moisturizers, are not quite keeping the symptoms at bay.  He uses eye drops for his dry eyes but with tremors in his hands and limited pincer strength, he has difficulty putting them in himself.

Jeff avoids handling paper because he doesn’t like wearing the gloves that he is supposed to wear while handling paper.  On Saturday, he opened some mail without gloves and got a paper cut.  He bled like a pig!  His platelets are below normal and I had some concern that the cut wouldn’t heal well.  He reports that it is fine today, thank goodness.

PT Mike recommended Jeff get an EMG (electromyography) test.  Mike thinks it will give him useful information.  Jeff called Dr. Pruitt, the neurologist, today to ask her opinion.  She agreed it would give useful information about the source of his pain so that the physical therapist could choose appropriate exercises.  She told Jeff repeatedly that the test is very unpleasant and left the decision to Jeff.  I heard him on the phone asking Dr. Pruitt whether he could have it scheduled for the next time he has an appointment at the Perelman Center.  I reminded him that he would have a bone marrow biopsy that day, too.  “Oh!” he said.  He isn’t sure he wants to have that much discomfort all in one day.  He will have to think about that.

Day Zero Plus Eighty-six – Two Patients Are Better Than One

I thought I could take care of two patients, no problem, since I’m an experienced “nurse” now.  Boy, oh boy, was I glad my sister, Judy, came to help me on Friday when Keith had his wisdom teeth out!  I stayed at home and did Jeff’s IV infusion while Judy took Keith to the oral surgeon.  Judy and Keith returned home with instructions for his medication to be given on a strict schedule and warnings not to take two of the medications together or extreme vomiting would occur.  Although he had only three prescriptions in total, I was feeling a little overwhelmed.  
 

Judy stayed at our house with the patients while I ran out for prescriptions for both Keith and Jeff.  We also needed pineapple juice because, evidently, every pharmacy in the country is out of the drug that Keith is supposed to have to prevent swelling.  Pineapple juice performs the same function only Keith tells me it doesn’t feel too good on those open wounds in his mouth. 

Keith’s post-op instructions said not to use a straw for several days.  Jeff told Judy that we don’t usually give Keith straw but that we would switch to hay for a few days, just to be safe. 

Keith complained very little and although he had a good appetite, he lamented that it hurt to chew.  Jeff said, “Chewing is the one thing I can do.”  Between the two of them, we have the equivalent of one healthy guy!

We’ve had a lot of rain this week so we didn’t get out for a walk every night.  Jeff and I used Google maps to measure our favorite walking route and learned that Jeff is up to 1.2 miles on a typical walk.  He is sleeping a lot these days.  His neck frequently hurts so he likes to lay flat.  That might be part of the reason he sleeps a lot.  He thinks he might be getting used to the oral magnesium again; his tummy doesn’t give him too much trouble.

Kim spent time with us this weekend.  She designed the most awesome shirts for The Dude Hates Cancer bowling event which takes place next weekend.  They are T-shirts that look like bowling shirts.  Judy used her fancy sewing machine to embroider team members’ names on their shirts.  See the link button at top right for more information about the event or if you would like to make a donation. 

Day Zero Plus Eighty-four – Guilt Trip to the Grange Fair

The Claus family has a long tradition of attending the Middletown Grange Fair on the Thursday of Grange Fair week each year.  My father judged guinea pigs and rabbits on Grange Fair Thursday for years and years and so our habit was formed.  Jeff was extremely disappointed when he realized he would have to miss the fair this year.  The crowds, animals, dirt, port-a-pots and chicken dinner (grilled, on the bone and served by several volunteers) are all forbidden for him – but not for me!  Jeff had hoped that the forecasted bad weather would thin the crowds, making it suitable for him to attend.  His nurses and family all insisted, “No!” 

I had been out to dinner – without Jeff, of course – only once since he came home from the hospital at the end of June.  I’d met my co-workers for dinner one night in July.  So I did not feel very guilty about going to the Grange Fair without him.  However, I completely understood his dismay at having to miss the festivities.  My mother had once signed me up for a two-week Girl Scout camp which kept me away from home during Grange Fair week; I’m not sure that I ever forgave her!  I told Jeff to think of it as his Girl Scout camp; he would just have to miss it this one year. 

As it turns out, Jeff had a rough day while I was at work.  He threw up his lunch and felt cruddy the rest of the day.  In addition to the magnesium Jeff gets in his IV, oral magnesium was re-started on Tuesday and it is upsetting his stomach.  He did manage to accompany Keith to traffic court (yes, another minor accident by our own darling “Crash”) in Hopewell Township, New Jersey.  Jeff’s mask and gloves saved the day, bumping Keith from Case #79 to the front of the line.  Still, it was a long afternoon for Jeff.

In the evening, Keith and I headed off to the Grange Fair.  Jeff was sore from sitting upright for much of the day.  I should have gotten something out of the freezer that we’d cooked earlier in the week but instead I had left a frozen dinner for him.  He isn’t allowed to prepare food so he is at our mercy, poor guy!   

At the fair, Keith and I met Kerry, Theresa, and Kim.  We saw many Claus family members, including Pop in a wheelchair and Mother in a walker with a seat – that is just how important this event is to our family!  We saw some friends we only see once a year, at the fair.  We saw some prize-winning photography by Cindy, a young woman I know from Rider.  We saw photography by Sarah, the daughter of a customer of Jeff’s.  We saw her rabbits, too, but we never found her pig or steer.  Our neighbor, Annie, won a blue ribbon for her beautiful cross-stitch piece.  And Hurray!  Becky’s beautiful blue prom dress had a matching Blue Ribbon!  Amy Lyn took a picture of the grand prize-winning low boy in the furniture department and she emailed it to her Uncle Jeff.  Kerry and Keith spent time in the tool vendor’s tent while Theresa and I saw the bunnies, guinea pigs and furniture.  We walked through the vendor tents with Judy, Mark and the young folks.  Of course, there was chicken dinner with corn on the cob, fresh tomatoes, cranberry sauce, boiled potatoes and Goodnoe’s ice cream.  Only horror of horrors!  They ran out of ice cream!  An unprecedented disaster!  I asked the family to tell Jeff that the meal was not very good this year.  I doubted we would fool him although Kim evidently did – with her stories of worms in the corn, smushy tomatoes, dry chicken…

There was a “flash mob” of barbershop singers which Mark noted was probably organized by aarp.net rather than through Facebook.  The evening’s main musical entertainment, the Dazzling Mills Family (Juggling, Unicycling and Comedy) promised to be wonderful.  Unfortunately, the sky periodically lit up with lightning and we decided to head out early and stop at Goodnoe’s for ice cream on the way home! 

I enjoyed the evening even though it was an abbreviated version of our usual fair experience.  Occasionally I missed Jeff and wished he could enjoy it, too.  It was good to be out, though.  In the car on the way home I suggested to Keith that we leave our dirty shoes in the garage.  I decided I would need to shower before I even kissed Jeff and certainly before I climbed into bed with him.  Visions of the fair’s wash stations near the cow and pig barns and posted warnings about hoof and mouth disease, made me feel like a transporter of dangerous germs.

When Keith and I returned home, we found Jeff eager to hear about the fair - who we saw, what we did, how was the chicken…  While we were gone, he had a flare-up of his GVHD rash and was itchy and his tummy was upset.  He said he did not feel like eating his dinner but he knew he needed to so he did.  I slathered medication on his rash; well, I dabbed according to doctor’s orders but it would be a lot easier to slather the many, many areas affected which included the tender skin very close to the eyes.  I rubbed his back as he drifted off to sleep.  He sighed and said, “It’s easier when you’re here.” 

Day Zero Plus Eighty-one – Cancer Breakthrough

The first item on our list of things to discuss with Dr. Porter today was to congratulate him on his team’s gene therapy breakthrough which was announced last week.  Here are links to the story:

Dr. Porter is in the video at this site

http://www.philly.com/philly/health_and_science/20110811_Penn_research_offers_new_hope_for_rare_cancer.html

http://www.nlm.nih.gov/medlineplus/news/fullstory_115248.html

http://news.yahoo.com/amazing-therapy-wipes-leukemia-study-205354211.html

Nurse Heather came into the exam room first and we talked about Jeff’s meds, his rash which is now mostly healed, and his blood counts - lookin’ good.  Heather left the room to discuss Jeff’s issues with Dr. Porter, then they both came into the exam room and, again, we got sidetracked talking about Jeff.  It wasn’t until the end of the exam when I consulted our list of things to discuss with Dr. Porter and realized we’d almost forgotten to congratulate him.  He beamed with pride!  Gene therapy is really promising.  I hope one day it enables us to view bone marrow transplant as we view bloodletting today – barbaric and obsolete!

Dr. Porter added the antibiotic Bactrim and oral magnesium back into Jeff’s drug regimen.  Both may cause diarrhea so Jeff can hardly wait to see what the next few days will bring.  The idea is to get him back on oral magnesium with the ultimate goal of stopping the IV magnesium and fluids.  Then, no more Hickman catheter!  That will be awhile yet, though. 

Neither Heather nor Dr. Porter made an issue of Jeff’s weight loss, another four pounds.  He told the nurse who weighed him that he has been eating the same amount of food and cannot explain the continued weight loss - except maybe he is exercising too much!  She laughed.  When he got dressed this morning, he found a pair of pants he realized always fit a little tightly.  Today they were very roomy but had less risk of falling off than his jeans. 

Jeff is whining because his next visit to Dr. Porter’s office will be with Jackie for a bone marrow biopsy - and that visit will be after Labor Day so he doesn’t know whether he can have grilled food at the picnic!  He’ll call the office sometime before the holiday to press for an answer to that burning question.  Dr. Porter said he doesn’t need to see Jeff for five weeks!  That is super news!  He says Jeff may, however, want to follow up with the neurologist. 

Our high school friend, Tim, was in from Texas to visit his parents and stopped to visit us.  It was great to see him and catch up on the news.  Tim asked questions about Jeff’s donor.  We have been thinking of her lately and wondering how she is doing and, well, who she is.  

Day Zero Plus Seventy-eight – Pillow Talk and Spotted Velvet

The highlight of my week was when my sister Tracy’s granddaughter, Ellis, sang a lovely rendition of “Zippity Do Dah” to me on the phone.  What a nice lunchtime treat, hearing her sweet voice all the way from Colorado!  Jeff reminds me, however, that this blog is supposed to be all about him - hmph.  So here is his news:

Dr. Porter would like to get Jeff on a schedule of visits that are less frequent than weekly.  This was an off week.  On Thursday, however, we thought we would have to make an extra trip to the city.  Jeff broke out in spots on his face, neck, arms and, to a lesser degree, on his legs.  It was the same little bumpy red rash that Nurse Jackie noticed at Jeff’s last office visit but more so.  A lot of it was concentrated around his ears and velvet hairline.  Jeff handed me a pair of reading glasses and pointed to an area behind his ear for me to check.  Interestingly, the area he wanted me to examine was far less affected – visibly, anyway – than other areas of his face and head.  I wondered why it felt worse to him in that particular spot.

Jeff asked Nurse Anthony to check the rash when he came to the house for blood and check-up.  Anthony said he’d seen Graft Versus Host Disease look much worse - large areas of red, swollen, scaly skin.  Still, he said he would report it and that Jeff should, too.  By that evening, Jeff’s eyes were itchy – oh, no! – and he could feel bumps in his ears, too.

Dr. Porter’s office called in prescriptions to our pharmacy.  The treatment is a prescription 2.5% hydrocortisone cream for the face and a formula that is available as an ointment or cream for the body.  We still had a small tube from the hospital in cream form and, now, two tubes of sticky ointment that Jeff is less than thrilled to apply.  We may have to ask for another prescription for the cream, if the rash sticks around.

After dinner last night, Jeff suggested that Keith and I go to the movies.  We both jumped at the chance!  As soon as we got in the car, we commiserated about wanting to get out yet feeling guilty because Jeff can’t.  I tried to convince Keith that we should go out after the movie to get some dessert but he had plans with a friend.  We saw the last of the Harry Potter movies.  When Sesame Place traffic diverted us from our normal route home, I observed that we would be passing a good place for vanilla milkshakes.  We didn’t stop, though.  I enjoyed a Weight Watchers fudge bar with Jeff at home. 

On Wednesday night as we were falling asleep, Jeff asked me, “Do you think I’ll survive?”  I rolled over and rested my head on his shoulder, praying for the right words to comfort him and not dismiss his fears.  As I hesitated, he said, “I’ll have to find a new niche.”  Oh, I thought - he’s thinking about life after BMT and about finding new pursuits that take his limitations into account.  Then, before I could form a response, he said, “I’ve been trying to spend a lot of time with Keith.”  I don’t remember exactly what I said but it was something like, “You’ll sort it all out.” and I finished with, “Don’t you think?”  No response.  I asked, “Are you asleep?”  No response.  I rolled over and marveled at the clarity of his expression while asleep!  Then he seemed to wake up enough to ask me, “Are you alright?”  I said, “Yes.  Are you?”  I heard him sigh and, “Yup.” 

The next night I told him about the previous night’s pillow talk.  He said, “Get out!”  We both laughed.  He suggested that I had made the whole thing up because he would never use the word “niche.”  I told him he most definitely used the word “niche” and it was probably his girly marrow at work. 

Jeff enjoyed some good phone conversations this week including one with his brother, Paul and another with Pete from church who is also a recovering patient.  My mother visited – an outing for her and company for Jeff.  A customer/friend of Jeff’s emailed and we realized it had been a year since he’d been in contact with her.  It was a year ago this month that poison ivy sent Jeff to the doctor’s office where that fateful blood draw revealed abnormalities in his blood.  What a year it has been!  Full circle: Rash to Rash!