Day Zero Plus Seventy-one – Music Truck, Making Jackie Mad and Walmart

Thursday’s PT session was pretty intense.  Keith went with Jeff because I was at work.  I usually use the time that Jeff is being stretched and strengthened to read or make phone calls but Keith chose to watch and, of course, he asked questions.  He thinks his Dad might be too polite when he tells Michael, the therapist, “That really pulls,” and instead should say, “YO!”  Michael says Jeff is tight and recommended yoga to help.  Jeff says, “I can’t do yoga!”  He hasn’t tried it, though. 

That evening Jeff and I went for our walk.  This time we walked around the A Field and I didn’t even have to drive him to the field.  We walked there from home – six blocks there and six back!  His stamina is better but he has trouble if a neighbor stops us to talk.  He has difficulty standing for more than a few minutes. 

As we walked, we heard a “Music Truck” (the name I gave ice cream trucks when our kids were little and the ice cream truck came by every night at dinner time).  The Music Truck was “spreading joy throughout the neighborhood” with such happy tunes as “The Yellow Rose of Texas” and “O, Come, All Ye Faithful.”  Jeff said, “Is that …?”  I said, “Yes, it is.  Christmas in August.”   We also heard “Rudolph the Red-Nosed Reindeer.”  Keith’s friend once tried to tell the driver that he was playing seasonal songs but there was a language barrier so he gave up.  Too funny!  The man does, indeed, “spread joy!”     

Friday morning was Jeff’s appointment with Jackie, the transplant nurse at Dr. Porter’s office.  When we checked in and paid our co-pay, the receptionist asked, “Are you having a bone marrow biopsy today?”  Jeff’s eyes must have been especially expressive over the top of his mask because the receptionist laughed.  He said, “No.  If I can choose, I choose NO.”  She said, “You don’t have to pay your co-pay if you are having a biopsy.”  Jeff said, “We’ll pay!”  

We were directed to Exam room #17 in which there was a stainless steel procedure cart such as are often used for biopsies.  Darn!  Jeff said, “If I have a biopsy, I want my money back!”  We had to wait for Jackie - about 45 minutes – during which time Jeff imagined Jackie was over in HUP’s Rhoads Pavilion seeing patients who were in “worse shape than me.”   As soon as Jackie entered the exam room, she said, “Hi!  How long have you had that rash?” 

“What rash?” Jeff asked.  She washed her hands and fingered some tiny red spots along his hairline - that very same hairline that actually has hair along it, his magical velvet chameleon-colored hair.  Jackie thought it might be a GVHD rash and asked Jeff whether he was using the CeraVe moisturizer she insisted he try.  No.  He wears a hat and a long-sleeved shirt, I told her.  She stared at him and said, “You will have to be very careful with your skin for three years!  Wear the lotion.”  I told her I’d looked for it at Target, CVS and Rite Aid and hadn’t found it yet.  (This conversation led us to take a trip to Walmart, another adventure which I will get to shortly.)  Jeff was so stubborn about the lotion that Jackie picked up the tissue box and whacked it on the desk, glared at him and sighed disgustedly. 

Jackie thinks Jeff’s digestive troubles were more likely due to GVHD than a drug allergy.  We won’t know until the antibiotic is re-introduced.  He did not need a biopsy.  That will happen at around Day 100.  What Jeff remembers most about the visit, though, is that Jackie said several times, “You look really good!”  He keeps telling people that.  I remind him that’s nothing new.  The nurses at the hospital said Jeff looked good and insisted, “You don’t look sick,” when he was at his very worst.  Well, I guess the guy likes to have his ego stroked.  I can’t really fault him for that. 

So, he looks good.  However, he scares children whenever he goes out in a mask.  They run to their mothers for protection.  He scares adults, sometimes, too.  A man at Walmart used a few explicatives within earshot of Jeff.  It seems he was especially distressed because Jeff was holding a Home Depot bag and not a Walmart bag; it was as though Jeff’s presence outside the store would be more acceptable if he were at least a Walmart customer (??).  Jeff wondered why the man couldn’t see he was a cancer patient because he sure has the look of one.  We have already established, however, that he is a good-looking cancer patient.

This weekend I was determined to find a store that carried the special moisturizer Jackie recommended.  She says men like it because it isn’t greasy and absorbs right into the skin.  That sounded good to me but I wondered whether Jeff would use it anyway.  I looked online to see which stores carry it.  All the stores I had tried already were listed on the CeraVe website yet those stores didn’t have it in stock.  I hadn’t tried Walmart, though.  Saturday night we decided to go in search of the moisturizer and some other things we needed.  Woohoo!  A night out.  We decided Jeff shouldn’t go into Walmart on a Saturday night; it would be too crowded.  We figured it was safe for him to go into Home Depot and we were right.  Hardly a soul would call Home Depot a good date night activity whereas Walmart (??!!)…  Anyway, he got supplies for Keith’s plumbing repair project while I went to Walmart.  He was finished first and walked to Walmart to wait for me.

During the time he stood outside of Walmart with the smokers (!) he noticed that Walmart has an interesting clientele.  I accused Jeff of not wanting to go into Walmart for fear of someone taking a picture of him in his mask and gloves and posting it on that weird Walmart customer website.  Jeff was not familiar with the site… Well, he is now and I’m sorry I ever mentioned it!  He has occupied himself with that site the entire time I wrote this blog entry – and he confirmed his picture is not currently on it.

Jeff spent some time today listening to Keith perform a plumbing repair in the basement.  Part of that time, Jeff was tethered to his IV pole so he didn’t go down to watch the process up close.  It was a gunky job so it was a good thing he stayed away.  When Keith wasn’t sure what to do, he came to the living room to ask his dad for advice.  This worked very well although the problem is not entirely resolved.  Kerry will come and help Keith tomorrow.  I wanted to call a plumber when the sink first started backing up but the professional didn’t want me to call a professional; that is just unheard of in this house.  I wasn’t sure the boys could handle it, though.  I am happy to report that they will be able to take care of it with minimal time and effort.

We’re still waiting for Jeff’s red blood cells to recover.  Somehow I feel less stressed about it because Jeff’s stamina is improving and I am more hopeful that we will see his RBC in the normal range very soon.  Jeff frequently shakes his head and says, “I don’t know,” or “I need a new body,” or “Don’t get what I have.”  I know it is getting tedious for him yet he retains his good spirit and sense of humor.