Day Zero Plus Four – a Vomit-less Day!

Jeff looked good this morning.  When I arrived he had already eaten half an orange and was very pleased with himself.  He had been given Ativan for nausea and he must have timed his snack (breakfast?) just right.  It stayed down!

He did not sleep all day and complained very little of elbow pain.  He rode his bike for 13 minutes with his sneakers on.  Afterwards, he got back in bed and left his shoes on.  I asked him if he wanted me to take them off.  “No,” he said, “it makes me feel like I’m ready to go.”  He watched a lot of TV and could focus on it most of the time.  An ad for diabetes products came on and Jeff said, “Why couldn’t I have gotten diabetes?”

Nurse Tamara said his Tacrolimus lab from the day before had been lost and they needed to repeat it.  If his “Tac level” is too high, that could make him nauseous.  In fact, it was elevated.  The dosage was adjusted and then, to test whether Tacrolimus is the cause of his elbow numbness and pain, it was stopped altogether for the evening.  If his elbow pain goes away, that will give the doctors useful information about what to do next.

Jeff ate three cookies in the morning, Frosted Flakes with a little milk for lunch, and a small cup of chocolate ice cream for dinner.  He also fixed and drank a cup of hot tea from his dinner tray.  He doesn’t dare open the food covers because the smell of the hospital food activates his very sensitive gag reflex.  He gave me a Wawa order for tomorrow:  Pop Tarts, Nutrigrain Bars, etc.  He isn’t ready to cook the microwave dinners (Chef Boy-ardee and Macaroni and Cheese) that I bought earlier because the cooking smell would be in the room.  I think the nutrition room has a microwave; I’ll have to check tomorrow. 

Today’s “meals” stayed down but, unfortunately, made a hasty exit just the same.  Steroids were started around lunchtime to help his appetite and nausea.  They were prescribed for only three days since there is a risk of masking infection – a dangerous situation if you have no white blood cells.  The dietician visited.  She wants to start giving IV nutrition even though there is a risk of infection with it.  A decision will be made tomorrow about that.

Keith visited in early evening, just as Jeff began to fade.  Jeff rallied enough to be decent company.  Hopefully, he will sleep well tonight.

Jeff sure needed a good day.  He knows there are more tough days ahead but a good one will make the difficult ones easier to bear.

Day Zero Plus Three

Rough day.  No biking.  Vomited three times.  Was drugged from anti-nausea meds and pain medication given for headache since Tylenol might mask symptoms of infection.  Tomorrow - steroids to improve appetite and nausea.  Alternatively, THC (marijuana). 

All of this is as expected. 

Somehow I am exhausted from watching him in his drugged stupor/sleep.  Can’t hold my head up.  Hope for better day tomorrow.

Day Zero Plus Two

Jeff did not have a good night’s sleep last night.  He thrashed around, then got up and walked and then sat in a chair – just trying to get comfortable.  His shoulders hurt and he has numbness in his elbows – his elbows can’t feel the bed when he rests his arms at his side – and it is painful.  By this morning the pain had traveled down his right arm (not his PIC line arm) and tingled in his fingertips.  The nurse was puzzled because neuropathy usually begins at the far extremities – fingertips and toes - and spreads from there.  Dr. Perl thought it had more to do with the amount of time Jeff is spending in bed, that he’d pinched a nerve in his back that goes down both arms (Mother had something like that happen). 

Judy, Mark, Amy, Sarah and Becky visited.  We were all in the room at once for a short time while Jeff held court.  The entire Rilling family is to be commended for the speed of their exit as Jeff’s morning  muffin came back up.  These episodes come on suddenly and pass quickly.  Since Jeff has become such an expert at vomiting he happily discusses in detail why a part of the muffin came out whole and why it might look like he’d eaten red peppers when he knew he had not…   He ate no other food the rest of the day but he did sip water.  Nurse Linda is determined to get his anti-nausea meds regulated so that he can eat.  She already has a plan for tomorrow so we hope she will be assigned to him again.

In the condition he was in today, I didn’t think Jeff would be getting on the bike.  He slept a lot and when he wasn’t asleep he looked drugged.  He pointed out that his hand tremor is back.  It was caused by his general weakness when he had it before and it went away when his strength returned.  While we sat talking quietly, he told me to “put the bolt in the washer” and when I asked what he meant he shook his head as if to say, “Ignore me; I’m babbling.”    He asked some questions about his blood counts and the counts at which exercise is allowed.  Then he got up from his chair and shuffled slowly to the bike.  I thought he was just strolling around the room out of boredom.  I asked him, “What are you doing?”  He said sleepily, “I’m going to ride the bike.  Ten minutes.”  And he did.  I had to keep talking to him to keep him awake and I suggested that it might not be a good idea to ride while impaired.  He said groggily, “How did you get that bump on your head?  I fell asleep riding my bike.”  He did his 10 minutes and we logged it for Dr. Lee’s study.

I hope he can eat tomorrow, Day 3.  As his counts go lower, he may feel lousy.  Any day now he may need blood transfusions which will help him feel better.  The next big milestone is around Day 18 when engraftment happens.  Engraftment is when Jeff’s new marrow begins to grow and make new blood cells efficiently.  It is measured by blood counts.  See: http://www.marrow.org/PATIENT/Donor_Select_Tx_Process/Waiting_for_Engraftment_Days_0/Measuring_Engraftment/index.html

Please pray for a settled tummy so he can eat and for his continued determination to exercise.

Biking on Day Zero PLUS One!

Jeff called me this morning as I was preparing to leave Kim’s apartment to head over to the hospital.  He was complaining about his sore shoulders (I think from spending too much time in bed; the nurse said it is not uncommon) and he asked me to pick up some packaged foods at Wawa.  This was the first time all week that he called me in the morning.  What a joy it was to hear him articulate his complaints and needs.   His shrugs and grunts of the last few days only told me that he didn’t know what he needed.  I am happy to oblige his specific requests – Pop Tarts, for example.

When I arrived at the hospital he was edgy, trying to “exercise” by walking around the room.  He isn’t allowed to leave the room so he was doing the best he could to follow doctor’s orders and get active as soon as possible.  He had already requested a bike but was told PT doesn’t work on the weekends - and this one is a three-day weekend so he would not be able to get a bike until Tuesday.  What?!  They knew he would be ready for a bike and didn’t make arrangements for him to get one?!  Unacceptable!  We politely mentioned this to Dr. Perl, the attending oncologist, who fully appreciated the problem but could make no promises.  We mentioned in to Linda, Jeff’s nurse, who did not seem to have any hope of resolving the issue today.

Nancy and Ken came for a good, long visit.  Jeff and I were both glad for the company.  As Nancy and Ken struggled into their gloves and gowns in the hallway, Jeff began vomiting.  I asked them to wait in the family room, knowing it would pass quickly.  Sure enough, it was over and done in a few minutes’ time.  He was given drugs to help and we enjoyed a pleasant visit with what Nancy noted was “the old Jeff.”

Pastor Oxley came, too.  It was fun to see him don the yellow gown and gloves. 

Pastor Oxley prayed with us but did not commune Jeff.  We will have to figure out a way for Jeff to commune at some point.  It will require opening a new bottle of wine and thinking up a creative solution for the bread.  Pastor Oxley is always good for a few laughs and, as always, we were very glad to see him.

Ken said he noticed a bike in the hallway and suggested finding out whether it was available.  When Nancy and Ken were about to leave the floor, they asked about the bike.  A wonderful nurse, Beth, offered to allo-clean it for Jeff.  Then Ken wheeled it into the room.  Having already removed her gown and gloves, Nancy waited for Ken outside the room.  She looked through the room’s generous window as the guys set-up the bike.  Jeff jumped on and began his antics for Nancy’s benefit, pretending he was riding one-handed and passing her in the street, and then standing/racing.  PT would not approve, I’m sure.  They can do their official assessment on Tuesday and who cares if he didn’t follow proper protocol in the meantime.  That bike was needed today!  He rode for 15 minutes right then and another half an hour in the evening.  What a difference a day makes!   

I rubbed Jeff’s back a lot today to try to help his aching shoulders.  It is not ideal to massage while I am wearing rubber gloves and he is wearing a T-shirt.  We are supposed to limit direct contact.  Not kissing him is very, very difficult.  So I kiss him on his T-shirt in the middle of his back.  I told Jeff that tomorrow I’ll ask the doctor if I can put on a mask and kiss him.  He said, “What fun would that be?” and suggested, “You can kiss my feet.”  He is full of good ideas…

I wish that Mystery Woman could know how well Jeff is doing today.  We know there will be issues which will arise during this process but what a relief it is to be able to refer to his transplant in the past tense!

Day Zero! Happy Birthday to Jeff and Kim!

Hey, gang! 

Jeff's celebrated his new birthday at 5 p.m. along with Kim who turned 25 today.  Here are a few pictures from the party.  Tastykake birthday cake (an allowed food) was shared by the birthday kids.  Isn't Jeff's donor just lovely?  She's the one in the bag.

Thanks for the love you keep sending our way!

Day Zero Minus One

The chemo drugs are leaving Jeff’s body so today was a better day.  He still vomited after his a.m. and p.m. radiation treatments but he is getting to be an ol’ pro at vomiting.  He was alert for short periods of time and could speak in sentences.  Even though I realize he is going through a rough process, it still made me very, very happy to hear him carry on brief conversations.  Paul was in the city and, luckily, visited during a wakeful period.   

I was getting giddy about this being Day Zero Minus One and Jeff was surprised that it was Thursday.  He kind of lost yesterday.  It took some convincing that Kerry, Kim and Theresa visited Tuesday night, not last night, and I’m not sure he really believed me in the end.

In the last few days, I had been showering Jeff with kisses because we won’t be able to kiss him for awhile.  Direct contact is to be limited and, of course, gowns and gloves are all the fashion in the tiny world of Rhoads Room 7024.  When I arrived this morning, five student doctors and the attending oncologist were outside Jeff’s room discussing Jeff’s case, I think.  All discussion stopped while I awkwardly went through the gowning ritual for only my second time:  I washed my hands,  gloved them while still too wet so that the fingertips stuck up two inches beyond my own fingertips making it difficult to tie the gown.  I could feel their eyes on me.  By the end of the day, having gone in and out for various reasons, I got the knack of it and could advise Paul who, like me this morning, looked a little bewildered at all the stuff and signs and oh-my-goodness-what-if-I-do-this-wrong?!  We need to remember it is just, as Kerry says, “risk management.”

Some of our family and friends imagine that Jeff will be having surgery tomorrow.  Not so.  It will be almost a non-event except for the life-saving aspect of it.  After his last two radiation treatments, morning and afternoon, Jeff will receive his new marrow like a blood transfusion, from a bag hung on his IV pole which will flow into him through one of his ports.  Easy-schmeezy.  Jeff’s donor had her first harvest of bone marrow today under general anesthesia.  We don’t know where that took place.  Her second harvest will take place tomorrow.  She will be a little sore but will fully recover in 2-14 days (depending upon who you ask).  I have a lot of quiet time at Jeff’s bedside and I think about her and wonder how she is feeling.  Does she wish she hadn’t been so generous?  Is her family worried about her? 

I told the attending oncologist that Jeff says he’ll be getting “cootie blood” from a girl.  The doctor mentioned CSI.  I think there was an episode where the male criminal had female (XX) blood because he’d had a bone marrow transplant.  The doctor said that Jeff won’t notice any effects of his new marrow for a day or so.  Then the drapes will begin to look wrong.  Within three days, the room will appear to need a makeover.  Eventually, he’ll be giving fashion advice…   Not very PC, but very funny.  I got a very different response from the chaplain who thought I said, “coolie blood.”  She said, “So you know that the donor is Korean?”  Also not very PC but she seriously thought that’s what I said!

O.K., Prayer Team.  Pray hard tomorrow!

Day Zero Minus Two

Jeff’s second and final dose of chemotherapy was given at 10 p.m. last night and his first radiation treatment was around 7 a.m. this morning.  Compazine and Ativan for nausea kept him sleepy today.  He lost any sense of time and spoke very little.  He vomited a few times.

We moved Jeff’s things out of his room around 10 a.m. and spent the day in the family room while his room was allo-cleaned.  I walked by periodically and saw cleaning staff working hard.  They removed the wall curtains and the privacy curtains, some were on ladders scrubbing the ceiling including the tracks for the curtains and hanging medical equipment.  The refrigerator and microwave were cleaned; the fan, computer and TV were scrubbed.  The bathroom, of course, got a thorough cleaning.  The walls, floor, furniture, windows, and bed were scrubbed.  Sheets were placed over the furniture and clean curtains were hung.  The process took most of the day. 

At 4 p.m. Jeff was taken for his second radiation treatment and the nurses took all of his personal belongings and wiped them down as well.  Anything that could not go back into the room was left in the hallway for me to take home.  This included his suitcase and his shoes.  He will need brand new shoes if Dr. Lee needs him to wear shoes for his exercise assessment near the end of his stay.  After radiation, Jeff was supposed to shower immediately with antiseptic soap.  Unfortunately, he began vomiting and we waited until his nurse, Jamie, gave him more drugs before he showered.  I wore gloves and gown, wrapped my purse in a gown and thought about everything I touched or that fell on the floor making it no longer usable. 

Although I don't know where the bone marrow harvest will take place, I keep imagining that tomorrow the mystery woman will be at HUP for the first of the harvests.  It could be that a carrier will bring her marrow from some other location but I wonder about that since the harvests are scheduled for Thursday and Friday.  Well, maybe she is very nearby.  Zero minus two and counting…

 

Day Zero Minus Three

Today was a sleepy day for Jeff.  He received his first chemo at 10 o’clock last night and woke up at 5 a.m. vomiting.  He was given Compazine to help the nausea and that is probably what caused his drowsiness.  He kept his breakfast down but not his lunch.  His nurse said Compazine works quickly on “active nausea” and, in fact, it did seem to work well.  Since he was nervous about eating dinner, he was given Ativan preemptively.  Ativan also puts him to sleep, too, so basically he slept all day.  I woke him up for meals and to say “hello” to his visitors.  He struggled to open both eyelids at once.  It was probably a blessing for him to sleep through this day.  I appreciated the visitors anyway.  It would have been a lonely day without them.

There were five IV pumps on his pole today.  In addition to the chemo drugs (one of which is Methotrexate which Mother takes for arthritis) and anti-nausea meds, he is getting antibiotics, anti-fungal and anti-viral meds, potassium, an anti-clotting drug, a drug to help prevent kidney damage and IV fluids.  He is also getting Tacrolimus, an auto-immune suppressant, which will continue orally at home for a few months after transplant to try to prevent Graft versus Host Disease (GVHD).  He is taking Vitamin E orally to help prevent problems with his gut and a tablet that dissolves in the mouth to try to prevent mouth sores.  I am quite sure I left something off of this incredible list.

Tomorrow is expected to be pretty rough because the effects of chemo continue for 24 hours after it is administered and he’ll get his first radiation treatment early in the morning which also causes all sorts of side effects, including nausea.  He will travel a couple of blocks from the Rhoads Building to the radiation oncology department in the Perlman Building in the morning and again in the afternoon.  The transport staff walks 10 miles a day!

His room will get allo-cleaned tomorrow so he will be moved to the family room and be given exclusive access to a staff bathroom for the duration.  It takes about three hours to clean the room and wipe down every surface in the room as well as every surface of the contents of the room.  Window and privacy curtains are removed and replaced with clean ones.  Isolation begins.  He probably will not be returned to the room until an hour or more after cleaning is completed.

The mystery woman remains unknown to us, of course, yet we have met many, many people on the transplant team and periphery staff who introduce themselves and tell us what part they play in the process.  The binder we were given during our patient care class has a business card page which is getting quite full. 

Thank God for good friends and a loving family.  Your well wishes are needed and appreciated.

Day Zero Minus Four

Today is what is known as “day zero minus four” in the transplant biz.  It was a tense day of waiting.  Jeff hadn’t slept well all night and woke at 5:30 a.m. Then he waited and waited.  It seemed like a long time to him.   He had decided not to shower - even though he was not yet tethered to an IV pole - because he thought he would be taken early in the day to have his PIC line and Hickman catheter placed.  When I arrived at 9 a.m., he was being prepped for transport.  Two and half hours later he was back in the room, reporting that he must have been transported two blocks away for the procedure.  With the exception of the administration of meds to help treat potential side effects, nothing happened all day.  I left at 5 p.m. feeling a little let down.  Nothing was happening yet! 

I spoke to Jeff around 7:30 p.m. and still no chemo.  IV fluids had been started.  I blubbered a little while reading email messages to him; the messages are all so heartfelt. 

Are We Off or On?

Two weeks ago, after I’d spent the day shopping with Kim and Theresa, HUP called and said, “We have Jeff coming in tomorrow…”  What?!  My heart danced as I imagined some miracle had occurred which would keep his transplant on schedule for May 13^th.  Then I realized that the admissions department had evidently not been advised of the delay due to donor illness.  I did not like being the one to inform them.   

Today, Jeff packed for the hospital and I packed to stay with Kim.  We waited anxiously for the call from hospital admissions.  By three o’clock we were at Kim’s apartment, with our bags, still waiting to hear from HUP.  I called the hospital and was told that his admission had been cancelled.  What?!  (Do you see a pattern here?)  I was told that we should call the doctor’s office Monday morning.  My gut told me that there was a mix-up, sort of the reverse of the mix-up of two weeks before.  I called the emergency number for oncology and spoke with the oncologist on duty who agreed that it would be strange to cancel the admission without notifying the patient.  He promised to make some calls, “even Dr. Porter, if necessary” (whoa!) to find out what was going on.  We went to watch the tail end of Kim’s kickball game (she scored!) while we waited for the call.  Before we went out to dinner we learned that everything was set.  Phew!  What a nail-biter!

Jeff, Kerry, Kim and I enjoyed dinner at the Royal Tavern (best burgers in the city according to some aficionados).  Dinner conversation was a little weak as we each drifted in and out of anxious thought.  After dinner, Kerry dropped us off at HUP and I helped Jeff get settled in.  I didn’t stay long because I saw that he was going to be kept busy: chest x-ray, a thorough work-up by the nurse and the preliminary evaluation for the research study Dr. Lee is conducting on transplant patients and fitness.  Jeff called briefly to say that Dr. Lee asked him to walk up and down the hallway as many times as he could in six minutes (18 times).  His calves were tight and he wished he would have stretched a little before the exercise.  He wanted to tell me more about it but Dr. Lee had returned with a 21-page questionnaire that he had not completed earlier in the evening.

I must say that there was something, well, auspicious about entering HUP with Jeff.  It’s such a relief to be at this stage at last and at this excellent hospital; yet, at the same time, it’s terribly frightening.  His room is nice and spacious and while the view isn’t the beautiful city view some of the rooms have, it also isn’t the brick wall we feared he would end up with.  I wonder where Jeff’s mystery woman is tonight and whether she has anxiety about her part in this.

Bald Heads, Thumbs, Bird Poop and Cootie Blood

Jeff’s fans have been sending positive greetings, vibes and prayers as his admission day approaches.  I enjoy rubbing his bald head “for good luck.”  Our friend, Tim, who is working in Germany for awhile, writes, “we will be pressing our thumbs (that's what they do in Germany instead of crossing fingers for luck)!”  When we were at Longwood Gardens on Friday (squeezing in as much fun as we possibly can), a bird pooped on Jeff’s jacket!  That’s good luck, too! 

I had occasion to see our family doctor last week.  He and his intern were asking about Jeff and the intern noted that Jeff’s blood will have two X chromosomes since his donor is a woman.  Dr. Peck was fascinated by this and, of course, jokes were made at Jeff’s expense.  Jeff says, “Yeah, I know.  I’m gonna have cootie blood.”

It's a Go-Ahead!

We heard from the transplant coordinator today.  She said Jeff’s blasts were in the 12-20% range (usually the report is more specific than that!).  Dr. Porter says Jeff can go ahead with the transplant.  Jeff noted how weird that is since it puts him about where he was at the time of his diagnosis and couldn’t he have been spared those other horrid treatments.  I guess they had to do something while waiting for a donor.   

There is, however, another delay – just one day.  He’ll be admitted to the hospital on Sunday, May 22, with transplant occurring on Friday, May 27^th.  Kim’s birthday!  Kim says that is a much better day for Jeff’s new birthday than Friday the 13^th!  I think we all agree.

The plan currently is to use donor #1.  We hope she is feeling a whole lot better.  We like to think of her as someone who would be disappointed if she doesn’t get the opportunity to help her mystery man (of course, we know him; the hero of our story, Jeff). 

Today Sandy, a co-worker, told me that her friend had recently been diagnosed with several cancers simultaneously:  ureter, kidney, prostate and lung.  Sandy said Art was a health-nut 25 years ago – perhaps before it was fashionable – and ever since.  Cancer doesn’t care, it seems. 

On Saturday, Theresa and Kim went with me to the King of Prussia mall to shop for MOG dresses.  I came home with two but, of course, I only need one.  A decision must be made…  It was so much fun to spend the day with the girls!  I love them for helping me feel pretty and to focus on the happy occasion which is to come after Jeff’s transplant. 

Prayer requests:

For Sandy’s friend, Art, for Jeff and his donor, Dr. Porter and his team and I could use some prayers for patience, if you wouldn’t mind…

News Flash: Mystery Woman is Sick!

Today, while waiting for Dr. Porter in the examination room, Jeff noticed a treatment tray in the room which was a big clue that he would be having another bone marrow biopsy.  He had hoped he wouldn’t need another one before his transplant.  The transplant coordinator, Jackie, and two other nurses came into the room (one was a student nurse) and began Jeff’s preliminary exam.  Heather wanted to confirm that he was not taking any medication and we reminded her that on Sunday he began taking Bactrim in preparation for the transplant.  She said, “You’ll need to stop that.”  Our hearts sank.  

We found out that Jeff’s donor has developed pneumonia or bronchitis.  Even Dr. Porter isn’t allowed to know too much about the donor so we will not get an update on her condition until close to the new transplant date.  Jackie gave us a new calendar of events and told us that a second donor will be lined up for the same dates so that if Mystery Woman #1 isn’t cleared for donation, the second donor will be used.  The new, tentative admission date is Saturday, May 21^st, with transplant on Thursday, May 26^th (the day before Kim’s birthday). 

Dr. Porter did not want to wait another two weeks without finding out what Jeff’s marrow is doing.  That was the reason for the biopsy.  His gut feeling is that everything is fine and we will be able to proceed with the new plan.  However, if the biopsy shows too high a percentage of blasts, another course of traditional chemo would have to be done instead of proceeding with the transplant.  He doesn’t think that is the case but it would be “poor form” not to check it.

Jeff has been grilling like crazy to savor as much summer flavor as he can before his post-transplant hibernation.  The delay will give him more time for grilling and restaurant meals.  We’ll have to have a picnic, I think.  Perhaps our traditional Memorial Day picnic will occur a little early this year.