Friday, July 18, 2014

Another Setback - Part 2

If you haven't read part 1, click here.

On Sunday morning, after a solid 2 and a half hours of sleep, I woke up to have my blood taken at 6:15am.  My nurse informed me that they were not able to get the Leukine I was waiting for and that they would have it when the lab opened at 9:00am.  My fever was down to around 99.1 and I felt ok despite not having slept much.  Around 8:00 I met my new nurse and had breakfast.  An hour later she told me she still didn't have the medication and I learned that my WBC was now 1.0, down from 1.5 just 10 hours earlier. I told her at this point that this needed to be escalated and considered urgent.  According to my oncologist I was supposed to have gotten it the night before in the ER and the fact that my counts were dropping so fast made me very nervous.  I believe that she did her best, but it was still another 2 hours before she finally came back with the shot of Leukine.  Apparently there was a computer problem with the pharmacy and she ended up having to override the system in order to get it for me.  Nonetheless, I was happy to finally get it and reverse the tide.  It is a shot that goes in your stomach and then stimulates white blood cell production in the bone marrow.  My faithful wife came to be by my side until after lunch and then left so I could try to take a nap.

Even Tiff had to wear a mask to see me.  No one wore it better though.

Around 1:30pm, after trying to fall asleep, I started feeling very hot, so I paged the nurse and told her I wasn't feeling well.  At that point my temperature was 101.7.   Shortly after that, I started getting chills and shaking uncontrollably.  Then back to burning up.  Around that time, my pastor had stopped by to visit and pray with me.  When he walked in, I said "this is really bad timing...well, since it's you, I guess it's good timing."  He didn't stay long, as I looked pretty bad, but he did pray for me, which I was going to need as the afternoon went on.  Soon after, my parents stopped by to visit and I filled them in on my condition as my fever had gone up to 102.5.  I told the nurse I thought I might be having a "first dose reaction" to the Leukine, and asked for some Benadryl, since that is what they give before chemo to prevent that type of thing.  She brought me some along with Tylenol to help with the fever.  I also asked to see a doctor to find out what was going on.

The next hour, around 3:00, my temperature had gone up to 103.7 and I was continuing the cycle of burning up and shaking chills.  I would take off all of the blankets for awhile when I was hot, and then cover up with 4 blankets while shaking.  My nose and fingers were cold to the touch while I had the chills, even though my fever was so high, it was weird.  We still had not seen the doctor, and I was getting upset about that.  We were told that he was coming, and that he ordered another antibiotic, but that was it.  At 4:00 my temperature was 104.8 and I was miserable.  At this point I lost it.  I couldn't talk much, so I gave my mother, who is a nurse, permission to escalate things with the nurses on my behalf.  We weren't getting any information and there did not seem to be any sense of urgency.  She left the room to talk with the nurse and her supervisor about why we hadn't seen a doctor and why nothing else was being done to reduce my fever or provide any information about what was happening.

When she came back without any new information, I lost all confidence in the hospital and demanded to be transferred to Mass General.  At that point, I felt like I was closer to slipping into a coma (which I think happens some point after 106) than to being at a normal temperature with no clue why or if it was going to stop.  I felt like whatever was happening was due to being a chemotherapy patient and I wanted to be in a facility that had an oncology floor, with oncology nurses and oncologists who could evaluate me in person.  The nurses were very nice and understanding, but I felt like things were out of control and I needed to be somewhere else.  They paged the doctor and were able to talk to him to initiate a transfer (although he still hadn't come to see me.)   I asked for damp washcloths to put on my head to cool me down and then an ice pack to do the same thing (I had to ask for these, which was a source of frustration.)  Shortly after we were told that Mass General had no available beds that day so I said I wanted to go to the Lahey Clinic in Burlington, MA.  I was suffering at this point and dark thoughts starting creeping in.  "Am I going to die?  Did I get some infection while my immune defenses were down and now I'm in a place that doesn't have the resources to save me?"  I prayed to God that this wasn't the case and remembered the scriptures that had been so comforting throughout this journey.  "Be still, and know that I am God."  "Fear not, for I am with you." "The Lord is a refuge for the oppressed."  "We are more than conquerors through Christ."  "The Lord is near to all who call on Him."  "I will not die, I will live to tell what the Lord has done."  All of these little snippets of bible verses came into my head.

A picture that Tiffany ordered for the baby's room that came this week. A reminder we both needed.

Around 5:00pm I started feeling like things were turning around and my temperature at that point had dropped to 103 point something.  A huge relief swept over us.  Tiffany was back by this point and over the next two hours my fever broke and my temperature went back down to 99.4.  I felt so much better.  Around 7:00pm I got a call from Dr. D'Silva.  When things were bad I had given his number to my mom and she had called and left him a message.  He had called the hospital to find out what was going on and then called me.  He talked me out of transferring as he confirmed the protocols they were using were the same thing I would get at Mass General or anywhere else.  He also explained that a spike in fever is expected after getting Leukine as my body is getting more white cells and going into fight mode.  Nevertheless, he said he would switch me to a different type of white cell stimulator called Neupogen going forward. This was good information that would have put me at ease about 5 hours earlier.  He gave me his home number and told me from now on to call him any time day or night if I need to.  A few minutes after he hung up, I got a call from Dr. Thatai, who reiterated everything Dr. D'Silva said.  While I was on the phone with her, the hospital doctor finally came in to see me.  By this point it was a different doctor than was initially paged as it was a new shift, but she also confirmed everything they were doing and what I should expect.  It was all great information and I told her how upset I was that I hadn't seen a doctor earlier as it would have relieved so much stress all afternoon.  I was able to eat some food and I tried to fall asleep around 9:00pm.  The chills and shakes started up again and my fever jumped up to 100.7, but it only lasted about an hour and I was able to fall asleep.  I woke up a few times over night for tests and to have my vital signs taken, but my temperature had dropped to 99 again and I was able to sleep for most of the night.

The next morning, Monday,  I woke up feeling better.  The day followed a similar pattern but much milder.  No fever until about 1:00pm, then fever around 99 to 101 until 5:00pm, then no fever, then small fever again from about 9-11pm. My white counts were up to 1.6, so the Lukein was working.  I got a shot of Neupogen at 11:00am.  I shared my frustrations about the lack of communication and sense of urgency with pretty much everyone I came into contact with starting Sunday night into Monday.  I called to speak to one of the nurses at Lahey to let them know I wouldn't be there for chemo.  I was able to ask some questions and shared my experience with her also.  Dr. Thatai also came to see me that morning, which added to my level of comfort.  All of the nurses at Parkland that day were very apologetic and attentive.  I don't blame my nurses from Sunday as I know they were doing what they could and were also frustrated, I just wished they would have been more communicative and had better avenues to access doctors on Sunday.  Monday evening I received an e-mail from the nurse navigator at Lahey, Katie, just to check in since she heard where I was and that I missed my last chemo that day.  I replied back that I was bummed out about missing my last chemo and shared very generally and respectfully that I was frustrated with the care I was receiving and was not a fan of Parkland. 

Tuesday morning Dr. D'Silva came to see me and my white counts were up to 2.9.  I also got a visit from the Director of Adult and Critical Care Services who was informed about my experience along with the hospital risk director from Katie.  We had a good conversation and I shared the whole timeline with her, along with my candid feedback about how things could have gone differently.  She was extremely apologetic, empathetic, and assured me she was going to "tear this apart" to make sure they made it right.  I really appreciated the follow up.  Later that afternoon, she returned with the hospital's Chief Nursing Officer who reiterated how apologetic they were and that they were going to be reviewing all of their protocols, training, procedures, etc, including the pharmacy issues, the communication, and the response/ availability of the doctors.  I tried to add in some of the positives that I encountered (including the care I observed of the guy with dementia) and added in my opinions about how they can improve the patient experience with things like the decor, the room layout, etc.  I ended the meeting by telling them that someone once shared with me early in my career that there are two characteristics necessary to be successful in business that I felt were just as relevant, if not more, in the healthcare field: empathy and a sense of urgency.  These two things were missing for me on Sunday.  They agreed and vowed to take action to improve and follow up with me (both of them already have once since I've been discharged.)  I appreciate that they are taking it seriously and I really hope my experience can help others avoid a similar situation in the future.  Tiffany brought the girls up to see me that night which was a spirit lifter.  They had fun playing hide and seek in the closet of my room and using the adjustable bed as a slide. 

Family picture taken the night before I went into the hospital

Wednesday I expected to be discharged and I waited until 1:00pm to see the hospital doctor to make it official (also shared with my new friends.)  But regardless I was so happy to be going home.  I was starting to feel the effects of nonstop high dose antibiotics for 3 and a half days which I did not like at all.  Aside from the bad taste it left in my mouth even though it came in through an IV, it was making me irritable and anxious.  I'm starting to feel back to normal today, although still very tired, so I'm taking it slow.  My last chemo treatment is now scheduled for Tuesday, 7/22, so I'll have time to be physically prepared.  Needless to say I am ready to put this chapter of life in the rearview mirror permanently!

Another Setback - Part 1

So close.  Last Saturday, July 12th, I was less than two days away from getting my last chemotherapy treatment when things suddenly went off the rails.  Before that point, I had already mentally moved onto life after chemo and made plans for everything I was going to do after this 6th and final cycle was complete.  I had sent my return to work date in to HR and planned my schedule for when I would be back in the office.  Tiffany and I had a trip scheduled the following week to fly down to South Carolina for a few days at the beach.  This was going to be a combination trip to celebrate our 10 year anniversary which fell in June, celebrate the end of chemo, and also one last getaway together before baby boy is due in September.  If there is one thing I've learned this year it's that life will interrupt your plans and you just have to adapt.  Am I disappointed?  Absolutely.  But I can't waste any time asking "why me?" when I instead I need to focus on "what now?"  So my return to work is going to be pushed out a little further, and we're looking to do a scaled down trip somewhere closer to home before the baby is born.  Improvise, adapt, overcome.  This is an unofficial slogan of the US Marine Corps and a great strategy for dealing with adversity in life.  There will always be things that knock us off track from achieving our goals.  These may change the path we had planned to get there, but the key is to stay focused on the goal and not get caught up in the temporary disappointments.  The only way to fail is to quit.

So here's what happened.  I went to sleep last Friday night not feeling great and woke up on Saturday feeling the same.  I was determined to check a few things off my to-do list that weekend in preparation for chemo on Monday, so I had some coffee and went to Home Depot.  I didn't get much accomplished as I started feeling more fatigued in the afternoon and tried to take a nap.  After 3 unsuccessful hours, I got out of bed feeling hot and took my temperature.  100.6.  Uh oh.  I knew I was supposed to call my oncologist if I had a fever above 100.4, so I was concerned, but hoping I wouldn't have to since it was a Saturday evening.  I tried another thermometer and it came back 100.4.  I decided to drink some water and wait 30 minutes and then take it again before doing anything just to be sure.  100.3 and then 100.4.  It was right on the edge but Tiffany gently encouraged (forced) me to page the oncologist on call.  Dr. D'Silva was not on call, but I got a call back from one of the other oncologists at the practice, Dr. Thatai.  She said that I needed to go to the emergency room to have my blood counts checked and be checked for an infection.  My white blood count the week before was  lower than usual, so she wanted to be sure it was back up where it should be at the end of a cycle. Since Lahey is affiliated with Parkland Medical Center, she directed me to go there since she could call ahead at the ER with her instructions and monitor my status through the same computer system.  I prefer to go to the Elliot hospital since I live near it and my mom and sister both work there.  She said I can go to any hospital I want, but she would not have access or privileges there, so I would have to coordinate between them and her.  Although I had never been there before other than for tests, I decided to go to Parkland.  I figured the ER wait would be shorter on a Saturday evening than at the Elliot and I wanted my oncologists to have full access and be in charge of my care.

I drove myself to Parkland, naively expecting to get checked out and leave with some antibiotics as a precaution.  There was no wait in the ER and I was taken right in.  The ER was bright, clean, and modern.  I was seen quickly by a nurse who accessed my port to start IV fluids and take my blood. I also had a chest x-ray taken.  I spoke with a physicians assistant and he had been in contact with Dr. Thatai.  I felt like I made the right decision and even told Tiffany she didn't need to come meet me as I would be home soon.  She came anyway because she's a good wife.  A few minutes after she arrived, the PA came back in with the news that I was being admitted.  My white blood count was 1.5 (normal is between 4.5 and 11) which means it had dropped from the week before when it should have been closer to 4 at this point in the chemo cycle.  That indicated that they were being used up fighting something and losing, so Dr. Thatai wanted me admitted to receive medication to stimulate white blood cell growth (called Leukine) along with IV antibiotics.  When I had my blood checked the week before for my regularly scheduled labs, my WBC was 2.2.  I could have had Leukine that day, but Dr. D'Silva recommended against it in order to "avoid altering the microenvironment" of my bone marrow this late in the game.  He expected the counts to rise on their own as they had every time up to this point.  Because of this, I questioned the PA in the emergency room about the Leukine and said I would feel more comfortable if Dr. Thatai could confirm with Dr. D'Silva before I agreed to take it.  He reluctantly agreed to call her back with my request and came back a few minutes later.  He said she was not able to call Dr. D'Silva (it was about 10:00pm on a Saturday night) but that she reiterated how important it was now since my counts had actually dropped since the week before.  I could have called Dr. D'Silva myself at that point since he had given me his cell phone number when I was first diagnosed, but I decided not to and I agreed.  At this point we just waited for the shot of Leukine and to be sent up to a room. 

View from my room

About an hour later the paperwork was done and the nurse came in to take me up to my room.  She said they were unable to get the Leukine shot in the ER, but that I would get it when I got to my room.  Once we got to the floor, we stopped at the nurses station where I overheard the ER nurse and the floor nurse mention that neither one of them had ever administered Leukine before.  I shot Tiffany a concerned look that said "oh, great..." After that I transitioned to my room where I would be on reverse isolation, which means everyone who entered the room had to wear a mask and take extra precautions since my immune system was so compromised.  My nurse was friendly and helpful.  She told me there was a problem getting the Leukine and that she had notified the supervisor and they were working on it.  Tiffany left around 11:30 and I asked for something to eat since I hadn't eaten dinner and was starving.  I fell asleep around 1:00am only to be woken up about 30 minutes later by an alarm going off and different voices arguing back and forth outside my room.  The elderly patient across the hall from me was confused and didn't know where he was.  The nurses calmed him down and reassured him he was in the hospital and got him back in bed after 5-10 minutes.  This same cycle continued every 15-30 minutes for the next 3 hours, at some points getting more escalated with him saying he was going to call the police and swearing.  As irritated as I was, I was glad to see how the nurses treated him with compassion and respect each time.  I felt bad for him and thought about how that is how I would have wanted my father or grandfather treated in the same situation.  Around 4:00am, I asked for some earplugs, which thankfully they had and I was able to fall asleep.

They came in around 6:15am to take more blood and I was up for what was going to be a VERY long day.

To be continued as I finish part 2...