It’s
a very good thing I am not afraid of needles.
Friday is really just a continuation
of Thursday as I was still settling into the hospital.
A crush of people from the doctors to the nurses to admissions folks all
rolling through to get things started. Once they start strapping on
wristbands with ID information, you know it's getting real. The next step
was to hang an IV bag; even more real. It was now 1:30am
and my head was still swimming from the events that just went down over the
last 12 hours.
First I was processing what the Dr. had told me. Yes, this was Leukemia (still in shock). There are sub-types of Leukemia and we needed the blood work to come back to determine which type. ALL & AML are two of the most likely types. Both would involve extensive periods (months) of chemotherapy (scary word). I will lose my hair (not the end of the world) and I would most likely become infertal. That one actually provided a light moment, since I'm 45 with three beautiful children and no desire to have four, it didn't seem like a huge trade off. I asked if they could guarantee the infertility, he said no. I'll have to file that one away. While it didn't affect my decision, certainly someone who goes through this as a younger adult would have to take steps before proceeding with treatment.
The elephant in the room is always around the prognosis, is this going to kill me? No one wants to ask the question straight out and it seems like doctors don't want to address it straight up. The most comforting words I'm getting right now are that all treatment plans lead to a cure at the end of the road, but still, it's hard to keep one's mind from the dark side.
Hospitals are 24/7 operations and as I finally tried to get some sleep at 3:00 am, I quickly realize this is going to be very hard to do. Besides all the thoughts bouncing around inside my head, there's a lot of external noise. Inside the room there are lights everywhere and the IV machine is pumping fluid. The hallway outside the door is non-stop activity as the people who are working the night shift are in the middle of their day and tending to patients. I can hear what sounds like a younger patient calling out every five minutes or so, I can imagine how scary this setting is for a child. On top of the inside noise, there's a train just outside the hospital that rolls through about every hour. Going to be hard to sleep.
At 3:30 am the chance for sleep is officially over. A two-person crew comes rolling in with some heavy equipment and announces that they're here for my PICC line. This stands for Peripherally Inserted Central Catheter and is supposed to be far superior to the normal IV line in the arm as they can both deliver medication and draw blood through a 3-headed contraption sticking out. The procedure takes almost an hour as they use ultrasound to locate your vein in your arm around your bicep, then thread the lead down to your heart. Because the anatomy is more favorable, this is typically done through the right arm.
The procedure is fairly pain-free other than the actual stick in the arm to insert the line. The line is secured with a bunch of adhesive.
First I was processing what the Dr. had told me. Yes, this was Leukemia (still in shock). There are sub-types of Leukemia and we needed the blood work to come back to determine which type. ALL & AML are two of the most likely types. Both would involve extensive periods (months) of chemotherapy (scary word). I will lose my hair (not the end of the world) and I would most likely become infertal. That one actually provided a light moment, since I'm 45 with three beautiful children and no desire to have four, it didn't seem like a huge trade off. I asked if they could guarantee the infertility, he said no. I'll have to file that one away. While it didn't affect my decision, certainly someone who goes through this as a younger adult would have to take steps before proceeding with treatment.
The elephant in the room is always around the prognosis, is this going to kill me? No one wants to ask the question straight out and it seems like doctors don't want to address it straight up. The most comforting words I'm getting right now are that all treatment plans lead to a cure at the end of the road, but still, it's hard to keep one's mind from the dark side.
Hospitals are 24/7 operations and as I finally tried to get some sleep at 3:00 am, I quickly realize this is going to be very hard to do. Besides all the thoughts bouncing around inside my head, there's a lot of external noise. Inside the room there are lights everywhere and the IV machine is pumping fluid. The hallway outside the door is non-stop activity as the people who are working the night shift are in the middle of their day and tending to patients. I can hear what sounds like a younger patient calling out every five minutes or so, I can imagine how scary this setting is for a child. On top of the inside noise, there's a train just outside the hospital that rolls through about every hour. Going to be hard to sleep.
At 3:30 am the chance for sleep is officially over. A two-person crew comes rolling in with some heavy equipment and announces that they're here for my PICC line. This stands for Peripherally Inserted Central Catheter and is supposed to be far superior to the normal IV line in the arm as they can both deliver medication and draw blood through a 3-headed contraption sticking out. The procedure takes almost an hour as they use ultrasound to locate your vein in your arm around your bicep, then thread the lead down to your heart. Because the anatomy is more favorable, this is typically done through the right arm.
The procedure is fairly pain-free other than the actual stick in the arm to insert the line. The line is secured with a bunch of adhesive.
Exhaustion won at 5:00 am, until the nursing shift changed over at 7 am. Each day starts with a review of the printed Plan of Care for the day. Today was filled with tests, sadly a somewhat welcome distraction from the hospital room. Chest X-ray, more blood to be drawn, then I was wheeled through the bowels of the hospital to other departments for EKG, ultra sound on my kidneys, bone marrow biopsy, and ultra sound on my heart. Each stop took over an hour and chewed up the day. I was feeling good about how thorough all the tests were, but as I was visiting through all these rooms with specialists and equipment, I began to think about how much all of this was going to cost.
I returned to my room in the late afternoon, my wife by my side still in shock about everything going on. I was growing more anxious about starting some sort of treatment. Other than some IV, I had not received any medicine to address my illness and I kept thinking about how the doctors grew more alarmed about my blood counts as they learned more information. I really wanted to take some sort of pill and get on with it. By late that evening, the Hematologist returned to review the plan. The blood results confirmed AML as the type of Leukemia and he started laying out the course of treatment. It would involve a sequence of phases; the first called induction, the follow ups called consolidation. The induction phase would last a full month with two days of pre-chemo drugs, then seven days of 'heavy' chemo, followed by 3 weeks of recovery time. From there we would flow into cycles of two weeks at home and two weeks back in the hospital for consolidation treatments which would last two weeks. Then repeat the home / consolidation phase as needed. At least there was a formation of a plan and we could start figuring out how to plan our lives out.
One of the last tests that needs to happen is genetic testing of the bone marrow biopsy. AML is broken down into sub-types; M3 and non-M3 variations. M3 is the most straight forward of the bunch so I'm already rooting for that outcome. The other variations lead to different paths that might also involve bone marrow transplants. Not rooting so much for that choice right now.
I try to picture the cute talking animated DNA strand in Jurassic Park when I tell this next part – it makes it less like a T-Rex coming after me. AML is caused when blood cells are going through their normal job of separating into twins to make new cells. Under normal circumstances the cells divide evenly and split the chromosomes down the middle leaving each with a good copy of your DNA. In AML, one of those cellular divides went wrong and a greedy twin steals extra chromosomes from the other. Once a bad copy is made, it will now keep getting copied and without checking it will over produce. So my blood was filled with bad white blood cells to the point where it was clogging up circulatory system. Where a normal system is supposed to have 10,000 white blood cells per microliter, mine was initially tested at 215,000! So, the treatment strategy here is to use chemotherapy to kill off ALL the white blood cells then allow the body to regenerate the good ones. The question remains if the body is capable to make good copies still.
By that evening I was pretty exhausted with the poor night's sleep and the full day of activity. Thankfully one of my sisters, my brother-in-law, and mom all live close by the hospital so my family is able to stay with them. It allows us to focus on the plan of care and keep the kids distracted from the event while playing with their cousins. I finally was prescribed some drugs including the pre-chemotherapy set which made me feel like I was finally taking the first step. And besides a few interruptions for vital signs, I slept like a rock.
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