Friday, July 18, 2014

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...

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