Tuesday, March 25, 2014

Losing Patience as a Patient


Thursday, March 20th

With the outside chance of going home I was anxious to see the blood results today. My WBC was over 6.0, platelets were good, Hemoglobin was a little low, and they ordered a pint of blood for the morning.  The only issue was that the absolute neutrophil count was not on the report.  For some reason it was not ordered which was strange since it has been on the report every other day.

Throughout the day each doctor seemed satisfied with my condition and was ok with my release.  I started asking the nurse what was standing in the way of me going home that evening.  She said that she'd have to check with my primary doctor; who had already told me he was ok with my condition.  By this point, NCAA games had started so I began watching, but was constantly wondering what was going on.  Next the nurse told me that my primary doc wanted to hear from the Infectious Disease doctor who also had already been in to see me and said he was ok, assuming my ANC was above 1.0.  My last test showed 0.97 and I knew that a new blood draw would show a number higher than 1.0.  But now it was late in the day and I was unable to get anyone to authorize another blood draw and CBC test.  I was starting to feel like the system was conspiring against me to keep me another night.

In the evening, another doppler was ordered on my arms to look at the PICC line and any potential clots.  The clot in my right arm was still there, what was unknown is if it was smaller or larger than the first scan.  I'd have to wait until a radiologist reviewed the scans.  They also found a second clot in my left shoulder. Obviously my body doesn't like the PICC line in my veins, but the doctors agreed to leave it in rather than remove it and have to reinsert it on my next visit.  I have to assume that they're not that concerned with it, but I do think about it every night when I go to bed.

As the day wore on, I resigned myself to staying the night.  I had basketball games on and was unhooked from all medications, so it was really just sleeping through the night.  I'd be headed home in the morning.

Friday, March 21st

I learned the first time through that discharging from the hospital is a slow-moving process, so I was balancing constant pressure on the staff with the patience to wait until the steps took place.  The new nurse came on at 7:00 and knew the plan to get me out.  The blood test from overnight had all levels where they should be for discharge.  Now the challenge was to get final sign off from each doctor.  I tried to push the nurse to get the sign offs, but she was having a busy morning with her other rooms, so I didn't see her for the second time until after 9:00.  Now she began chasing doctors for discharge orders.  The problem is she chased one at a time rather than all at once.  It took until 11:00 to get the ok from Oncology. Next was Infectious Disease, who said ok.  Then primary care, he said ok and signed orders for meds.  Now it was after 1:00 pm. The last thing I needed was supplies and instruction from the nurse to flush the PICC line during the break. Again, her busy schedule kept her until around 2:00pm.

She demonstrated the process (which I've watched 100s of times by now), but during the demonstration she found that one of the two lines was blocked.  She'd have to call the IV team to come and unclog it.  I knew that meant at least an hour before they showed up, the day was slipping away and my anger level was on the rise, so I settled in to watch some basketball games.  The IV guy showed up and went to work.  He found the line blocked as well, which meant they needed to inject some cathflow to dissolve blockage.  This needs to sit for two hours!  UUUUGGGGHHHH!!!!

Despite my best efforts, it took until after 5:00pm before I was walking out the door.  Now I got to sit in 5:00 Friday afternoon traffic through Orlando on my way home. After 30 minutes I was on the turnpike and on cruise control headed for Vero.  By 7:30 I was home for dinner and the start of a two week break before round three.  I think it was a longer trip from my room to my truck than all the way home, but I made it at last.

Thursday, March 20, 2014

Set Backs


Friday, March 14th

After short and sweet lab visits
on Wednesday & Thursday, Friday morning I packed up the dog and my things and said goodbye to the Masters Family as I was headed home and they were headed out on a ski vacation to Park City on Monday.  The lab visit went quickly although I noticed my blood numbers had not responded as I had expected.  My WBC count was very low still even with the shots.  I emailed my Dr. as I left the lab for home and he responded that I needed to continue with Neupogen until my blood levels returned to acceptable levels.  This was a different than the set five days originally explained to me, now I understand that this phase is based on blood results.  I planned to go up to Orlando for Saturday & Sunday visits, then return Sunday night into Monday. My appointment was set for 3:30 on Saturday so I would at least get to enjoy a night at home and make it to my daughter's soccer game.

Saturday, March 15th

After a lazy morning, I went for a bike ride with Joanne down to Round Island Park where there are typically manatees hanging out during the winter months.  Today there were several very active ones swimming and splashing around, it never gets old watching them. There's a short path that leads to an observation tower we walked to, my pulse was pounding pretty hard after just three flights.  The low blood counts were not helping me.

We drove separately up to the soccer game, I took Emily with me for some quality time (she watched a DVD with headphones in) and then I picked up Tyler who had been referring during the morning.  I let him get some more driving practice by taking us up to Melbourne. During the drive the lab called me and asked me why I had not shown up for my
10:00am appointment.  I said, because I was told it was 3:30 today.  The lady on the other end of the phone told me that they close at 3:00 and I needed to be there by 2:30.  This basically meant that I would miss the entire soccer game which made me feel horrible.  We stopped off at my favorite pizza spot in Melbourne (Bizarros New York Pizza), the only place in Florida that actually makes good NY Style pizza.  They have pre-made pie sitting out that you choose from, they warm it up for a few minutes and bring it out.  It's right by the beach so they have some nice outdoor seating.  I don't know what went on there, but somehow they botched this simple process and 'forgot' half of our order.  Under a deadline and still without any patience I was pretty upset.  I said goodbye to everyone except Brenna who was already at the soccer field warming up.  I was pretty down.

The lab visit didn't get much better, my numbers were still in the dumps, I found out that the only reason they called me in early was that they were trying to get out of work early, and the nurse scolded me about not wearing a mask outside while I was Neutropenic (low Neutrophil count).  This visit was on a different floor than my appointments during the week so the entire visit seemed out of kilter.  I left, with my mask on, and walk out to my truck to drive back to my sister's house.

At least the kids were excited to see me when I returned.  I was able to watch some basketball
Saturday night, but have to admit, I was not feeling great.

Sunday, March 16th

I returned for my
11:00 appointment at the center where they told me I needed a two unit platelet transfusion.  I had platelets before and it wasn't a huge deal, it was just going to take some more time. They pushed in Benedryl proactively prior to the transfusion.  I don't know if it was my other low counts or how quickly the nurse pushed in the medicine into my PICC line, but I had a massive head rush and felt very close to passing out.  I fought for 20-30 minutes to remain conscious before my head came back around.  The first of two bags of platelets was going in and I was now just feeling sleepy from the Benedryl. My eyelids started to swell again which is always disconcerting when looking into a mirror.  By the time the transfusion was over, it was already after 3:00 in the afternoon and I was wiped out.  As much as I tried I could not get any actual sleep in the hard reclining chairs at the office.  I decided that I wouldn't be able to make the two hour drive home and went back to my sister's. The kids were now asking why I kept saying goodbye, but still kept coming back.  I was just hoping the swelling in my eyes had subsided enough that they wouldn't be freaked out.

Monday, March 17th

The Masters had to leave at
5:00am to get to the airport so it really was goodbye for now.  I had to return home to get all of my work things as well as enough clothes to stay the week as my blood numbers were still not good.  This visit went quickly and I was home by lunchtime.  I worked for the afternoon but was starting to feel feverish. I was able to see the family again and eat dinner at my own table, but by bedtime I was asking where the thermometer was located.  It showed a 99.2 confirming that I had a low grade fever. Abnormally high temperatures are not good with low WBC counts. It was a restless night's sleep.

Tuesday, March 18th

I was able to see the kids off to school (except Tyler who gets up at
5:45 to catch his bus by 6:15 every day, that's just crazy), it was nice to spend a normal morning at home.  I then drove the 2-hr drive back to Orlando for my 11:30 appointment.  My wife was getting nervous about me sleeping over at an empty house with a potential infection brewing.  When they took my temperature at the clinic, it was now 100.7.  The nurse put a call into the Dr. and he ordered me to be admitted directly to the hospital.  I was starting to feel worse as the day went on and honestly wasn't too upset about this situation.

By the time they wheeled me over to the hospital, I had full-blown chills. The admission process took longer than expected with several people coming in and asking information that should already be in the computers.  I found out that they had order a precautionary chest X-Ray which was back down on the first floor (from the 9th), this was another uncomfortable process since my fever and chills were still raging.  They gave me some warm blankets as they wheeled my down on a bed which helped.

It was
11:00 before the first IV antibiotics were hung, clearly with all the moving parts and dependencies, the admitting process is not the most efficient.

Wednesday, March 19th

Picking up here in the overnight, around
1:00am my vitals check showed a 102+ temperature which really cranked up the concern. The nurse brought in ice packs to place around my body.  Now I was fighting the chills with layering on blankets while I was fighting the fever with ice packs.  It was a choppy rest of the night.  By the morning there was finally some good news.  The white blood cell count had gone up from 0.5 to 1.7.  My morning temperature was down to 99.

A PICC line nurse showed up and informed me that the radiologist saw that the PICC line was inserted too far and was touching my heart. I have felt a fluttering sensation on occasion around my heart and at night, I've had some trouble sleeping on my left side.  The nurse said that is because the line is too far in and is touching the heart when I bend into certain positions.  He did confirm the original measurement is the same one that he would have recommended (they use a measuring tape outside the body to determine the length of the line).  He backed it out 3 centimeters.  As he was leaving, the mobile X-ray team rolled in.  They were scheduled to shoot after the PICC nurse finished (efficient timing), so they snapped a few X-rays and the PICC nurse was able to verify the new placement looked good from the film.

The Oncologist stopped by in the afternoon and threw out the bold prediction that my levels would be high enough by
Thursday to get discharged.  I've learned too many times not to pin hopes on predictions, but hard not to start to get excited.

Wednesday, March 12, 2014

Taking a shot


Sunday, March 9th - Monday, March 10th

After spending a great Sunday with the family, it was time for them to return to Vero for the week again.  Our visit was shortened this week due to soccer games, so they didn't arrive until Saturday night.  Joanne suggested that Summer (our dog) stay with me for the week to keep me extra company and force me to take a few more walks.  I liked the idea and there was no objection from my niece and nephews who ask their parents every day when they're going to get their own dog.

Monday morning I was awake early and joined in the morning school routine with my sister.  My nephews are in 1st & 2nd grade and are classic brothers needling one another, playing ball together, and forever competing against each other.  With the clock change they were dragging to the bus stop this morning, but we all walked out including Summer.  Sure enough, "Mom, when are we going to get a dog?"  I don't think my sister and brother-in-law have a choice any longer.  My niece woke up after and loves that the dog came to lick her face in the morning.  After a little breakfast, they took off to her day care and I settled in to work for the morning.

In the afternoon, I had my first office visit at the Florida Cancer Institute for follow up care.  It's located next to the hospital in Orlando.  I drove myself down and then spent a good deal of time navigating my way around the building until I found the office where I was supposed to report on the 8th floor.  The set up was strange from hallway as it almost seemed like a closet that I was walking into with a reception desk crammed on one side and a few waiting chairs.  I signed the paperwork and wait for my name to get called. A tech came out to get me and walked me back through a door which I though led to a simple exam room.  Instead, we walked into a large open treatment hall that took up almost the entire length of the building.  In the center was the large nurses station with six or so nurses buzzing about.  Around the perimeter of the room was recliner chair after recliner chair most filled with patients sitting in them.  Next to the chairs were medicine stands with pumps running chemo treatments.  There was even a full hospital bed in one of the corners.

When I walked through the door I was hit with an emotional wave. First was the shock at the size of the place that I thought was divided doctor office space.  Next, I was overwhelmed with the level of activity that was taking place in the room, as it was essentially an open outpatient treatment hall.  Finally, I started feeling very sad as looked around at all the faces who were there doing battle with their own cancer.  Most of the floor was women, most of them in their 70s or 80s.  So many frail people wearing battle tested faces.  In the hospital, the patients were all in separate rooms and frequently behind closed doors.  It always felt like 'here are a few of the unlucky ones', but never overwhelming.  Now I was staring at a whole new crowd of people that was much bigger and all together in one place.  I'm not sure if it was the thought that the number of people in the fight is way bigger than I had imagined or if it was that you had to look them all in the eye at one time, but this was a visceral experience for me that left me feeling depressed.

As for my treatment, the nurse had to change out the dressing that covers and protects my picc line, draw some blood, and give me a booster shot.  The dressing turned out to be tricky as the adhesive had fused to the pads under it and pulling it off without hurting me took some extra time and care.  Fortunately for me, the nurse was very experienced and did a great job.  I admit that today I felt drained from the chemo treatments of last week and needed to lay down when I returned to my sister's house.

Tuesday, March 11th

On Tuesday morning I had an appointment with my Oncologist as well as the labs.  I could tell I felt better already than yesterday and arrived at 8:45 for my 9:00 appointment.  I was only a few pages into my paperwork when they called me back and the tech took my vitals, showed me to a treatment room, and told me the Dr. would be right in.  It was 9:00 and I was impressed how quickly things were moving along.  My sister was playing a tennis match and I was hoping to watch the end of it.  At 9:30 I had finished my paperwork, caught up on emails, and played a game of solitaire.  By 9:45 I was aggravated.  By 10:00 I was opening the door back to the hallway and asking what the hell was going on.  It wasn't until 10:15 that the Dr. showed up and when he did, he realized that no one had taken a blood sample for him to look at the latest results.  My blood pressure was good when they first checked it, but I was about to blow a gasket.  Not sure what other industry has this type of indifference towards customers.

Once the visit started it went pretty quickly.  My numbers were recovering nicely with the shot from Monday, I would continue the shots for the rest of the week, then he expected my numbers to fall a little next week until my body picked up the slack naturally. Once my body brings the levels back up, we take a two week break then schedule round three.  So I'll be back home by Friday and get three weeks there most likely this round.

I returned to the 8th floor for my booster shot and was once again greeted by a room full of totally new faces receiving treatment. While the nursing staff was familiar, every one of the chairs had a different person in it again.  This time I smiled as I walked back to my spot.  I sat next to a little old lady from Miami who could not have weighed more than 90 lbs and was probably 90 years old. She smiled at me and said it was great to have a handsome man in the unit.  Since this is mostly a women's floor for breast and ovarian cancer, there isn't much competition.  But it made me realize that we all can find some happiness regardless of our situation.  I walked out of the clinic with a smile on my face.

Saturday, March 8, 2014

Patience (or lack thereof)

The week is finally drawing to a close.  With a slow start and fast middle, Thursday & Friday were quiet days with most of the focus on work.  As I rolled into Friday night, the big focus was getting the chemo treatment out of pharmacy to keep on schedule for release on Saturday.  With blood levels looking good, it was just a matter of getting through the final two servings of chemo on Friday night and Saturday morning and I would be ready to go home.  I prepped the nurses and the doctors to put pressure on pharmacy to keep on schedule.  Since receiving the first chemo so late on Monday night, it's been an uphill battle getting back on schedule.

As 8:30pm rolled around on Friday night, the nurse was already applying pressure on the pharmacy.  When 9:00 rolled around, she actually went there herself and retrieved the meds.  I felt that if we started around 9pm, then we'd be in good shape for 9am in the morning, and release by noon.  I went to sleep feeling like we had half a chance.

I managed to sleep until 7:00 (reminder that when I say sleep, that's naps broken up by bathroom breaks from IV and nurses visits or 8-10 times of waking up in the night), I ordered breakfast and started packing.  The day nurse came on shift and was well aware of the pharmacy / discharge goals.  8:00 nothing, 8:30 nothing, 9:00, nothing, 9:30 nothing, 10:00 nothing.  While this seems like a short-term goal to get out of the hospital at a reasonable hour, my lack of patience, along with the new person living in the room next to me who is coughing out a lung every few minutes, is driving my anger level up with each passing minute.  I broke down and called the nurse who I already knew was doing everything she could to move things along.

I didn't show up by ambulance or medivac as an emergency.  I was scheduled for this visit since last week.  My meds were not rush ordered, they were scheduled for the week.  The order for last night and today's meds have been in the computer all week.  At 10:00, when I called the nurse, she actually said that she had the chemo in her hands.  BUT, they had not made the chemo pre-meds that drip for 20 minutes prior to the chemo going on.  Now I'm not a pharmacology graduate, but it would seem to me that mixing medication that requires pre-medication before mixing the pre-medication seems wrong.  Despite having a week of time to get this situation figured out, the last chemo was hung at 11:00am, on the exact late scheduled that was started on Monday night.


I suppose that in the list of disappointments this is a small one and it's just time to suck it up and move on.  Lunch is on the way, the sun is shining outside, I get to leave the hospital today, round 2 of 4 of chemo is now complete, and will see my family tonight when they arrive at my sister's house.  Hard to argue that it's not a great day.

Thursday, March 6, 2014

Weekend in sight


Tuesday, March 4th & Wednesday March 5th

Much better days for me mentally, as I feel like the march is on towards
Saturday.  The first two helpings of chemo went down ok, and we're still on schedule for finishing on Saturday and I should get released so long as my blood levels look good.  There is a chance some of those numbers are low and they'd have to hold me over an extra night until Sunday.  For some reason, that's not bothering me as much as it did returning to the hospital.  They did finally order the IV so I'm back on the stand 24/7 again.

With a better mood going and still in good health, I dove into a bunch of work to pass the time.  
Tuesday, my in-laws arrived from the snowy and cold north.  They stopped by in the late afternoon and took me down for some dinner in the hospital cafeteria.  It was great to see them face to face, but I realized I didn't take a picture after they left. Out of practice I guess. They headed on over to Vero to spend a few days there with Joanne and the kids.

On Wednesday, Joanne came up to spend the better part of the day with me.  I also got a surprise visit from Jen Shultis - an old adventure racing friend.  She was in town for work and stopped by. It was great catching up on life and reminiscing about adventure races of the past. Again, forgot to click a 'happy snap' as my dear friend Addy likes to call them.

Wednesday night they hung the third chemo bag as I was falling asleep. Tuesday's sleep didn't go so well so I was pretty tired, but I logged some good hours last night. The best part was, it was already going to be Thursday when I woke up and that seems very close to getting back out of here. We're already discussing discharge plans with the Doctors and setting up my office visits for next week which I just have to go for 30 minutes each day to take a blood sample and get a shot.  Way better than hanging around in the hospital.

Joanne and I watched Dallas Buyer's Club last night, pretty good flick. Even though it was an AIDS story, I could definitely identify with Ron Woodroof's singular will to beat the disease. Worth a rent if you're in the mood for some slower drama although female McConaughey fans might be disappointed as he sucked down to 143 lbs for the role, but the performance won him the Oscar.

Tuesday, March 4, 2014

Back At It

Monday, March 3rd

After almost two weeks at home in the wake of good news from the first round of treatment, I had one of the hardest days I've faced so far when I had to return the to hospital.  The mental challenge of thinking about the hospital routine was very difficult and a little depressing which is an emotion that I've avoided for the most part.  I was well enough to drive myself up to my sister's house who then brought me over to the hospital at 10:30am.  The day didn't seem to get any better as I went to my assigned room and found the small broom closet configuration.  The nurse came in and went through the admission process again, which seemed redundant since they have 90% of the information already in the computer.  She eventually drew blood, which at least felt like health care progress.  That was around 1:00pm.  Next was the new PICC line, which was inserted into my left arm around 4:00pm.  I was starting to get a little aggravated with the time line as the chemo was scheduled for Monday, Wednesday, Friday, and Monday was slowing slipping away.

The Oncologist arrived around 5:00 to review the plan and finish ordering the chemo.  He informed me that we'd almost certainly go through three rounds of Consolidation, which pushes out my completion date by another month.  He also told me that he spoke to a transplant guy who thought I would be better served to have a bone marrow transplant, although my Dr. didn't yet agree with the assessment.  Some downer news that also has future work travel plan implications.  At least the final prerequisites were in place to get started.  Then the wait continued.  My mom came by with dinner, no chemo.  The nursing shift change took place at 7:00pm, no chemo.  My evening medications and vitals were taken at 9:00pm, no chemo.  The nursing staff was calling down to the pharmacy frequently, no chemo.  It finally arrived at 11:00pm.  My depression had turned more to anger at this point.  I was feeling like the day was wasted and that my Saturday discharge was now in jeopardy.  My first round of chemo ran for seven days, 24-hours a day, I assumed this round was the same.  When the nurse finished hanging the bag she said she would be back at 1:00am.  I asked why.  She said that the chemo would be done by then.  This was the first piece of good news on the day, it would mean that while I would get my last dose of chemo on Saturday morning, it would be over in two hours so it also gave back some hope for Saturday discharge.  The other part that was positive was that no IV had been ordered at this point, so once the chemo was finish, she would unhook me from the stand and I could sleep through the night with no attached tubes.


Besides the events of the day, I also took notice of the little things in the hospital that I hadn't missed over the last two weeks.  The constant interruptions by doctors and nurses, the sound of the pumps (motor and alarms), the sound and sight of the Medivac helicopter taking off from the pad behind the hospital, and the dread of poor sleep through the night.  It was the end of a long, challenging day with some set backs and mental challenges.  It was harder than I had imagined, but at least there was some progress and glimmer of home to stay on schedule at the end of the day.