Day 105 – Loosening Up The Reins

This morning we headed into the city for Jeff’s appointment with Nurse Jackie.  There was more traffic on I95 than there has been at 7:30 to 8:30 a.m. and Jeff speculated that the people who took Fridays off in the summertime were now back to their regular schedules. 

You might think that the tedious drive would raise Jeff’s blood pressure but it measured just fine in the doctor’s office.  It always does there.  Yet at home the nurses get readings that are quite alarming.  They express concern at each visit.  We had a lot of time to consider this phenomenon while we waited for Jackie.  Jeff theorized that when the nurse arrives at the house, Giblet starts barking, probably causing his blood pressure to become elevated.  On Monday, we’ll test the theory by putting Giblet out back as soon as we see the nurse drive up to the house.  We don’t know whether it is healthy, in any case, for his BP to be that high. 

At the Perelman Center, Jeff had a lot of blood drawn for several tests, beyond what is done for him routinely.  Then we waited for Jackie.  And we waited.  And we waited.  Jeff sat forward in his chair and rested his chin in the cup of his hand and then remarked on the quantity of skin that he inadvertently brushed off his face.  Although he used his “lotions and potions” this morning, his skin seemed to be snowing off his face. 

Finally, Jackie sashayed in and immediately noticed Jeff’s white, flaky skin.  He said, “My face is falling off.”  And he assured her that he was using his creams as ordered.  She wanted to see his infected toe and before he had his shoe off, it became apparent that she is squeamish about loose toenails.  She recommended Epsom salts which evidently work as an antibiotic and will help the nail lift off.

We discussed Jeff’s medications.  She laid out the Tacrolimus taper.  This would mean one fewer pill tonight and each night, then gradually lower dosages until he is completely off the immunosuppressant - if everything goes according to plan - by early December.  As his new immune system takes over, we will have to watch for signs of GVHD: tea-colored urine or yellow skin, for example.  Jeff is weaning himself off his Neurontin (nerve pain pill) and Ambien (sleep aid).  Only three pills will be required tonight! 

Jackie reported Jeff’s blood counts.  His hemoglobin was the highest level it has been since his diagnosis; not in the normal range but encouraging nevertheless.  I think this fact alone has helped my jaw relax and will have to do for now since we may not know the results of the biopsy until Jeff’s visit with Dr. Porter on September 20^th.  Jackie gave us a new list of do’s and don’ts:  yes to restaurants, no to buffets; yes to fresh fruit and vegetables but not at restaurants where we cannot control the care taken to wash them. 

When Jackie went across the hall to retrieve the stainless steel treatment cart for the biopsy, we overheard a conversation she had with another patient.  The poor man was trying very hard to persuade Jackie to allow him to lay in fetal position for his bone marrow biopsy.  (That happens to be Dr. Kennedy’s preferred position; she is as short as Jackie is.)    The man said his back had been too sore after his last biopsy and he felt strongly that his position during the procedure was the reason.  She tried to negotiate a “compromise” but we could tell she was not even trying to be flexible.  She told the man that pregnant patients sometimes lay on their sides.  He began to insist he was pregnant!

Jackie wheeled the cart into the room and had Jeff lay face down on the examination table with his pants dropped a little.  While Jackie opened her biopsy kit, Jeff asked a series of questions to clarify his new liberties:

 

“Can I cook?”

“Yes,” said Jackie.

“Can I clean?”

“Yes.”

Can I wash dishes?”

“Yes.”

“Can I do laundry?”

“Yes.”

“Can I work in my shop?”

“Y- ummm…  What do you do in your shop?”

“Darn,” Jeff said.  “I should have snuck that one in the middle.”

“I’m a mother,” Jackie replied.  “I look for those sandwiches.”

“I make spoons on a lathe,” Jeff said.

I told her that he used to make custom kitchen cabinets, some of which were shown in magazines.  He said, “Now I make spoons.”  She said she thought it would be alright to try, if he uses common sense and wears a mask.

Jeff felt that the needle to numb his back was more painful than the other five bone marrow biopsies he has had in the last year.  Soon, however, Jackie was drilling and probing and Jeff could not feel much.  She drew out a core sample (I don’t know the medical term but you get the idea) and dropped it into a test tube.  “See that on the sides of the test tube?” she said to me.  I saw blood-tinged, thick, white-ish goo sloshed along the sides. Jeff didn’t care to look.  “They’re the stem cells,” Jackie said smiling.  “It looks really, really good.”  Let’s hope the lab finds them as “attractive.”

We were happy to be finished at the Perelman Center.  It had taken all morning.  We went to Kim’s apartment then went out for lunch, Jeff’s first restaurant meal since May!  He had a Reuben and fries. 

On the way home, Jeff reflected on his last year of treatment.  “I wonder how I would be if I hadn’t had been diagnosed when I was.  I can’t help wonder whether I would have been better off without treatment.  Yet I know that can’t be so.”  I asked him a question that my sister, Tracy, posed to me last night on the phone.  “After your March hospitalization, you said that you would never do chemo again except for the pre-transplant conditioning.  If you were told you had to have chemo again would you do it?”  I wondered whether it really was as like childbirth as Tracy once suggested; after enough time has passed, you forget the previous experience enough to consider doing it all again.  He said, “Well, what are you gonna do?”  Come what may. 

When we got home, we started Jeff’s IV infusion.  Jeff had hoped Jackie would have found it unnecessary to continue these.  I reminded Jeff that oral magnesium gave him digestive problems and the present plan, magnesium in the IV plus two pills a day, seems to work well.  Jeff slept and I was too exhausted to do the cleaning I usually do while he is being infused.

This week it seemed to me that Jeff was doing better.  He has been working hard to reduce the amount of time he spends napping and he is finding ways to be productive around the house.  His desire to get back in the shop is an indication of improvement, I think.  There might be a better way to describe how we both feel: tentative joy?  We decided it isn’t a kick-up-your-heels kind of joy, just a peaceful, tentative, low-key joy.

Jeff has plans to have breakfast with Dan tomorrow morning and we have visitors lined up all weekend.  That is good.  We need our people.  And I don’t have to worry about getting all the cleaning done on the weekend because now I have a house-husband capable of taking care of household chores!  Awesome!