Eggs and Arsenic

Our first day spent all alone, just the two of us, and we both felt drugged.  I guess “wasted” would describe it pretty well.  I slept eight hours last night for the first time in many months.  Jeff didn’t sleep as well as I did but it was better than sleeping in a hospital.  For all that good sleep, we still had trouble dragging ourselves out of bed.  A late breakfast in bed gave us the energy to get up. 

We settled in the living room and I read aloud from The Horseshoe Curve: Sabotage and Subversion in the Railroad City, a gift to Jeff from the men’s group at church.  After only four pages, I noticed Jeff had fallen asleep on the sofa.  I put down The Horseshoe Curve and read my own book for awhile, until I realized I was falling asleep, too.  So back to bed for me.  When I woke up, I felt drugged, so much so that I briefly considered the possibility that our heater was giving us carbon monoxide poisoning.  It wasn’t. 

Later, Jeff spoke with his sister, Debbie, on the phone.  He told her he was amazed that he had slept for four hours in the middle of the day, so soon after breakfast.  He said he wondered if I was drugging him.  She asked what I made him for breakfast.  He said, “Eggs and arsenic.” 

My niece, Amy, had commented a few months ago that Jeff and I were behaving like 15-year-olds since his diagnosis: touching each other excessively, looking each other in the eyes, etc.  It has become our custom to say things 15-year-olds might say like, “You’re the best,” with the response, “No, you’re the best.”  And, “I love you,” “I love you more.”  And now, “You drugged me!”  And “You drugged me more!”

Interestingly, this was the first day since his return home that Jeff did not require the medication for pain which puts him to sleep.

Typhlitis Belly Report:  down to 42” from 44”, normally 38”

Home Sweet Home

On Saturday morning, Jeff came home!  He was exhausted by the trip but joked that he thought we should stop at Home Depot on the way home.  When he stepped into our living room he said, “Oh, someone oiled the floors.”  I said, “No...”  I guess the hardwood looked pretty dark compared to the sterile hospital.  He said all the wood in our house looked really dark to him.

Giblet didn’t recognize him at first.  I think, if you saw my video of the reunion, you would be able to hear her very loud sniffing.  Maybe Jeff had hospital smells or chemo smells that made it difficult for her to recognize him.  Once she was sure it was Jeff, she danced and sang, ran through the house barking and looked happier than I’d seen her since the 3^rd of March.  She seemed to bark at everyone who came in the house as if to say, “Daddy’s home!”

We don’t recommend this diet plan to anyone but Jeff lost 25 pounds in 23 days in the hospital.  Food still does not have a lot of appeal for him but he knows he has to eat and tries everything we put in front of him (some things never change).  He can’t answer the question, “What do you want to eat?” with anything but “I don’t know.”

Jeff and I both had an excellent nights’ sleep Saturday night.  On Sunday morning, Kerry, Theresa and Keith joined us for breakfast.  Jeff called it “Breakfast with Uncle Fester” and he wished he could roll his eyes like the bald Addams Family character. 

It was my goal to get Jeff out on the porch for a little fresh air.  He surprised me by going upstairs for his sneakers; he wanted to go for a walk.  He walked up and down our block twice on almost-steady feet. 

He had many visitors.  Our neighbors brought lasagna dinner – fantastic!  We were told to expect macaroni and cheese from other neighbors tonight.

This morning (Monday) was pretty quiet.  Jeff slept a lot in the morning while I got some things done around the house.  Palmer and Greg came to give us some music therapy.  It was great!  They played, “Baby Ben,” “Drunken Man’s Dream,” “Lover’s Waltz” - a jig, some blues, an Irish tune - some really beautiful music.  Very therapeutic! 

Home!

Friday, March 25, 2011
Today Jeff's blood counts were up and he was feeling much better.  With his head shaved and patchy, he definitely has the look of a cancer patient.  His energy level was good; he and Mike (oncology PT) walked the entire 3rd floor of the hospital.  He didn't need pain meds until the afternoon.  The Typhlitis is still present but "40% improved," he thought.

When Dr. Terzian (from Dr. Kennedy's office) saw Jeff, he used the "H" word!  Jeff was ready to pack up immediately and head home but the decision to release him would ultimately be made by the infectious disease physician.  Jeff tried to find out when Dr. Poporad would be expected so that he could look the most alert and well that he possibly could.  About two looong hours later, Dr. Poprad came.  When he saw that the wound from Jeff's PICC line was greatly improved (and Jeff bravely did NOT wince when he touched it), he declared him ready to go home tomorrow - as long as there are no setbacks overnight.  Woohoo!  I packed up his gifts and some of his belongings and Judy and Mark helped me haul it out to the car when they visited at dinnertime.  Harry and Linda also visited.  Everyone was relieved to see him walking and able to sit in the family room for awhile.  Judy could not believe the difference between his condition on Tuesday and today.

I headed home to clean the dog and the house.  I wanted Giblet to look pretty for Jeff; they will be very, very glad to see each other tomorrow.  Giblet spent the last three days at Mother and Pop's house and Kerry planned to pick her up after work.  When I mentioned Giblet today, Jeff thought that we would pick her up on our way home and he was concerned his belly would be too sore to hold her in his lap in the car.  I think he was hoping he'd only have to travel to Bensalem to see Giblet, and not all the way home.  I explained that she would already be at our house.  He nodded his understanding of the logistics.  I think that he might have been close to tears; he is so eager to see her.

I think I will cry with joy when we leave the hospital tomorrow.  Twenty-three days is a long first-hospital-stay-ever.  Jeff has already invited me to take a nap with him tomorrow.  That's why I married him; he's so romantic!

A New Day

Jeff had a much better day today.  His pain is managed and the #%!* PICC line is no longer a problem.  He asked me to bring Kerry's trimmer to shave off the rest of his hair.  Yesterday he would not have been able to sit long enough for me to do that.  He rested after his head was shaved, then we got a shower chair and he took his first shower in five days.  It exhausted him but at least he was fresh as a daisy!  Later in the morning he got up to go to the bathroom (I could see he was much steadier on his feet) and he asked if I wanted to "go for a spin."  I was floored!  While I was getting him ready for a walk - unplugging his IV and getting his slippers - Mike, the oncology PT, walked in.  He was glad to see Jeff up and about.  Mike accompanied Jeff on his walk and I took a few minutes for a little stroll by myself.  I must say that I had a spring in my step today!  Jeff's blood counts are going up and we should continue to see improvement.   He still had Typhlitis pain but it was manageable, with the proper drugs.  A visit with Kim in the afternoon was the icing on the cake!

Drugs.  Yes, well, there are side effects.  Jeff was looking for the proper word to describe his dreams.  I suggested “hallucinations.”  He wasn’t sure that was the right term but he said they are definitely weird.  For example, he dreamed that he saw about 10 people wearing tissue paper dresses, blue with white trim, waving in the breeze. (Gee, that sounds a little bit like a hospital gown to me.  Or maybe the blue plastic gowns we had to wear when he was being tested for C. Diff.)  Anyway, he said he saw these dresses and thought that he “wouldn’t be caught dead wearing one of those…  Am I dead?”

Kim and I enjoyed popsicles from Jeff’s stash in the nurses’ freezer.  They are the fun ones with riddles on the sticks:  Who sleeps with his shoes on?  and What do you if your fish can’t sing?  (a horse; tuna fish)

Wait and See

Jeff had a rough time last night.  His night nurse disapproved of using pain medication, saying, “It will delay your recovery.”  He said she was on a soap box about it.  He was confused by her contentions and was afraid to ask for the meds that had been prescribed for him.  Dr. Kennedy spoke with the nurse manager to find out what the night nurse was thinking.  The nurse manager spoke with us and we told her that although the nurse was probably trying to be helpful, she really wasn’t.  Jeff doesn’t want to make any of his nurses angry since he has another week to go. Still, she has to know.

It had taken us a week to talk Jeff into using pain meds and in 10 days with Typhlitis, he had taken only about 3 low doses of Dilaudid.  He was in pretty bad shape – fever and pain - when I got there this morning around 8:15 a.m.  The nurses were having a mandatory meeting and his day nurse did not see him until 10:20 am, after we had asked several times for his meds and after I asked if it was alright if I give him Tylenol from my purse. 

The infectious disease doctor checked Jeff’s belly today and asked his routine questions including, “Any sweats, chills?”  Yes, he sweated through his miserable night and, yes, his teeth were chattering, too.  The doctor looked at him with a serious expression and said, “That’s a problem.  Where is your IV?”  Jeff lifted his arm to show him his PICC line (#2).  When the doctor saw the flaring red skin of the underside of Jeff’s upper arm, he said, “That has to come out.” 

The PICC line had been giving Jeff trouble for several days.  Dr. Kennedy had asked the IR technician who inserted it to look at it again and stitch it in instead of relying on the clamp.  The clamp wasn’t holding the hub of the port outside his skin properly.  In preparation for the removal of the PICC line, an IV was put into his right arm but it cannot handle the TPN (IV nutrition) so Jeff will have to make a better effort to eat.  The technician hadn’t been able to look at the IV on Monday or Tuesday.  When he came to remove the PICC line today, he said the clamp was missing.  Jeff remembered that on Sunday, the night nurse had cleaned it.  The clamp must have come off then.  The PICC line will be cultured.  Jeff sighed in his drug-induced rest/sleep and muttered, "one less thing that hurts."  He was relieved to get rid of the darn thing but where will they stick him next, I wonder?

Dr. Kennedy heard from Dr. Porter today.  Dr. Porter thinks that the bone marrow biopsy should be repeated on Day 27 (Wednesday or Thursday next week) and it may show better results by then.  So we are in wait-and-see mode.

38 to 44 in Two Days Flat

Our vocabulary continues to expand.  I actually knew the crossword puzzle clue for a 5-letter word meaning “lowest point.”  Nadir.  Jeff is fully in his nadir and has received 7 pints of red blood cells and 5 units of platelets (If you have ever donated blood, thank you!).  Typhlitis, a word I wish we didn’t know, is the gut infection caused by the loss of good bacteria along with the bad bacteria in the intestine and colon.  http://www.uptodate.com/contents/typhlitis-neutropenic-enterocolitis 

Jeff’s waist, normally 38”, is 44” and hurts like mad.  He has not been able to eat more than the occasional popsicle, baked potato or toast in over a week.  His nurse and I finally persuaded him to take pain medication.  He was afraid it would make him nauseous and couldn’t bear the thought of vomiting with his gut so sore.  He chose his drug carefully and has been taking it fairly regularly over the last two days.  Fever makes him pretty miserable.  I have seen the first evidence of discouragement and the first of his tears.  Really. He confessed that these were his first tears!  Incredible!

The biopsy results are in.  The chemo worked but not as thoroughly as Dr. Kennedy would have liked.  Instead of “empty marrow,” he still has 10% of his marrow cells.  Of that 10%, 31% are blasts.  Dr. Kennedy will consult with Dr. Porter to decide what should be done.  Another course of this chemo would be toxic to his gut and would extend his hospital stay quite a bit.  We should know more tomorrow.

One night, Jeff went to the bathroom, then fumbled-tumbled back into bed and realized he’d forgotten to flush his toxic waste.  He called the nurse – she had to measure his urine anyway – and was embarrassed and apologetic about forgetting to flush.  She said, “Honey, poop is poop.”  Another nurse told him, “Poop in the toilet is good.”  Now you might be thinking to yourself that I might have refrained from sharing this story but it was Jeff’s single contribution to this blog entry.  I had to include it.

For those of you who are hair-watchers, the time has come.  It’s lettin’ loose.

The Luck of the Irish

While I watched the start of the St. Patrick’s Day Parade in the family room at the hospital, Jeff had his bone marrow biopsy.  We are hoping for the luck of the Irish!  Results will be available late tomorrow or Monday. 

Jeff was cranky yesterday for the first time since he has been in the hospital.  It wasn’t too hard to take since Jeff’s cranky would be considered normal for some people.  He could still crack jokes with the nurses and his visitors.  Certainly he has had a reason to be cranky before now.  I know he is nervous about the biopsy and really uncomfortable with his stomach distended.  His stomach pain impairs his ability to bend which makes it difficult to get in and out of bed or to move much at all.  He is absolutely amazed that he has been on a liquid diet for four days and doesn’t even care.  During his biopsy today, he fantasized that the needle went through his hip into his colon/bowel and psssssssst, deflated it like a balloon.  He asked me to bring a tape measure so he can measure his stomach as it deflates.

Fever dreams are always interesting.  Jeff had a sore mouth and his tongue was a little puffy on one side so he dreamed that he was talking funny and no one could understand him (maybe like Tracy’s granddaughter, Hailey, saying the Pledge of Allegiance, Blah-blah-blah-ba-ba, blah-blah-blah…).  In another of his dreams he attempted to compartmentalize his body parts in boxes made of Tetris shapes, all of which had to be filled with the right part.  His legs needed to be positioned just so, so that they would make black lines to form a V or a triangle.  The poor guy was probably just trying to get comfortable in his sleep.

There have been many competent, friendly nurses on duty but there was one unpleasant student nurse who, unfortunately, may have been led down the wrong career path.  She is a senior but not very skilled with the stethoscope; it took her a long time to get Jeff’s vital signs.  She goofed up the pump on one of Jeff’s IV bags which required a couple of nurses to troubleshoot.  Her teacher chided her for putting our lovely blue plastic gowns in the wrong trash container, “They’re hazardous waste.”  The other students try to help her and she treats them gruffly.  At one point she said, in a nasty tone, “What did I do wrong now?”  While I was out of the room, she visited Jeff to “do an assessment.”  He expected her to listen to his lungs, check his legs for swelling or take his vital signs.  Instead, she took out a pen flashlight and, after several tries, got it to turn on.  Then she aimed it at Jeff’s eyes and said, “Open wide.”  Jeff was momentarily confused by her request and, thinking that he was obeying her, he shut his eyes.  After several seconds he realized his mistake, opened his eyes, laughed out loud and apologized.  He said she did not find it humorous at all and looked like she didn’t know what to do.  Nancy and I thought that we would open our mouths if we were asked to “Open wide.”  Ah, well, maybe she can sell pharmaceuticals or something…

Nurses Kerry and Kim

Week 2 is the hard week.  Jeff’s white blood cells are down to 0.4 and he has had a fever for a couple of days.  He is on a broad-spectrum antibiotic which has wiped out the “good flora,” the good bacteria from his colon and part of his bowel, causing some problems which are being watched by an infectious disease specialist and a gastroenterologist.  He has a blood infection which will probably be taken care of by the antibiotic.  He was tested for “C diff” so we had to wear lovely blue plastic gowns today until his test results came back negative and it was no longer necessary to take that precaution.  All of this is expected if you work in oncology and a little disconcerting, if you don’t.

Jeff was given platelets yesterday morning and will probably get more tomorrow.  He was really uncomfortable yesterday and not up to company.  Today he felt better – thanks, in part, to anti-nausea meds - until the evening when his fever spiked again.  He had some moments of humor but he is pretty weak and not able to eat much.  Dr. Kennedy gave him a reprieve on the PICC line since he wasn’t feeling well.  They will likely put in a new one tomorrow.  In the meantime, his IV needed to be replaced since it was four days old. 

Chris, Jeff’s day-shift nurse, got busy and asked Donna (Nick thinks she is “not unattractive;” too bad she is married to a detective and they have three kids) to put in Jeff’s new IV.  I asked Chris whether Donna is the resident expert, the one who can always find the vein.  Chris said that, yes, Donna is the best at IVs.  I thanked Chris for getting the good “sticker” to do the job.  Donna is pleasant, gentle, compassionate (and not unattractive).  I thanked her for all of that (except that last part).  She said she always prays when she does IVs and prayer seems to serve her - and her patients - very well.  She told us that her church prays for Jeff every Sunday.  I told her that our church prays for her!

One night, the night shift nurse on duty was named Kerry and the nurse’s aide was Kim.  I took a picture of the dry-erase board that showed the names of the nurses and sent it to Kerry, Kim and Keith.  Kim texted back, “If Dr. Keith shows up, let me know.”

We expect a few more tough days.  If you can, call before you come to make sure Jeff is up to company. 

Prayer requests:

Infection-fighting and infection-preventing prayers, please.  And prayers for the kind folks who work the oncology floor:  medical staff including student nurses, cleaning and maintenance staff, transport services, food services.  Also, prayers for good results on the bone marrow biopsy scheduled for later this week.

Recipient, Meet Donor

Dr. Moshe Chatsky was the oncologist on duty this weekend and Kim and I were lucky enough to be present when he visited Jeff.  This wonderfully warm young man was pleased to tell us that he has been called by the NMDP to donate stem cells/bone marrow.  He put himself on the registry before he was in college and now he is an oncologist and he is delighted to be needed.  His blood is being screened further and he is waiting for the call.  He marveled that his stem cells could be needed anywhere in the world.  He wondered whether he was needed in Israel or a surrounding country.  We similarly wonder where in the world Jeff’s stem cells will be coming from!  We compared notes about what we have been told about the process, giving us a happy connection of sorts – donor/recipient.  God bless him!

Dr. Chatsky told us something interesting.  He said his stem cells were desirable because he was male and, therefore, never pregnant.  Hmmm… Why would that be?  Could it have to do with CMV?  Dr. Kennedy had told us that when Jeff’s blood was screened, they learned that he had never been exposed to CMV (thanks to Judy, we now know that is cytomegalovirus, a type of herpes).  So the blood that is ordered for Jeff must be CMV negative because it would be dangerous to expose Jeff to CMV now.  This morning I was cleaning off my kitchen counter and found a note I had written after I last donated blood.  It said “CMV cytomegalovirus, multi-pregnancies.”  I was told by the NJ Blood Council that my blood could only be used for study since I had been pregnant five times and was at a higher risk for CMV.  I was told that I could visit one of the NJBC locations to have my blood tested for CMV and then, if clear, they could use my blood for donation.  I haven’t done this yet.

We have been hearing stories about people whose tastes – particularly tastes in food - changed after receiving stem cell/bone marrow transplant.  Jeff confessed that he was concerned he might lose his interest in woodworking.  I don’t know if that would happen but we began to brainstorm skills that would be nice to acquire - wondering, once again, about Jeff’s donor.  I told him it might be nice, for the wedding, to get the marrow of a good dancer.

Bloody Good Day!

Friday was a tough day.  Jeff was again indifferent to food and disinterested in reading or even having a back rub.  His blood counts had dipped.  Dr. Kennedy ordered red blood for him and - ouila! - Saturday was a good day!

Unfortunately, Jeff’s PICC line had to be removed.  In a few days, he can have another one placed in his left arm.  In the meantime, his right arm has a special purple hospital bracelet to alert nurses not to take his blood pressure or draw blood from that arm.  When the nurse gave him his purple bracelet he said, “Oh, good!  Now I can get on all the rides!”

Jeff is one of the youngest patients on the oncology floor and the nurses, I think, are a little fond of him.  Among his winning attributes are his charm, his sense of humor, and his functioning organs.  One of the nurses has dubbed him “The best pee-er on the floor” for his ability to produce large amounts of urine (yes, it has to be measured).  Another nurse wanted to “play his numbers” because he produced the exact amount of urine three times in a row!  Well, I’m glad he has nurses who take pleasure in their work.  Upon learning of her father’s distinction in this area (“Kim, I’m the best pee-er on the floor!”), Kim quipped, “You pee on the floor?!”

Ken and Kathy visited on this bloody good day and found Jeff to be his usual funny self and looking good.  Jeff asked about our next Dinner Club night.  It was decided that Jeff should gradually “acquire” eight hospital gowns for the group so that we could have a hospital-food-themed dinner and we would all have the appropriate costume.  MMM!  Can’t wait!  (How can hospital food be prepared at home?)