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!