See Ya Simon
This morning it became official. I was getting discharged. There wasn’t too much fanfare in the conversation. I had remained fever free and every culture had come back negative. With no reason to keep me any longer, my DC orders were written and I was out!
I wrote about what nightly vitals are like earlier in the week but didn’t get a chance to post it. While in the hospital, I get vitals (BP, Temp and PulseOx) every 4 hours. This means I never get more than 4 hours of sleep (and hospitals claim they are trying to make you better!). It’s hard to describe the routine, but it’s necessary. Some nights I’m almost already awake for it and other nights I’m sound asleep. Below is what I wrote earlier in the week.
Sometimes I wake at the click of the door. Sometimes it’s the sink light coming on. On good nights, I don’t wake until the nurse is right by my bed. It’s time for vitals and labs. I want to stay asleep, so I robotically go through the motions I know all too well. I lay flat on my back. I stick my arm out into the air and the blood pressure cuff goes on. My pointer finger extends for the pulse oximeter and I open my mouth for the thermometer. I lay still as the monitor beeps when each vital comes back. Sometimes I hear what they are, but often I don’t. A brighter light goes on and it’s time to be stuck. Sterile kits are opened, protective gloves applied. The familiar countdown of “3, 2, 1, stick” is barely audible as I keep my eyes closed. A needle pierces my skin and with any luck the blood flows into the tube. But luck hasn’t been on my side lately, and most likely I’ll be stuck again because the first vein isn’t producing. All the fun finally ends and I hear my urine jugs being emptied into the toilet. Then the lights go off. At this point, all alone, I allow myself to wake up a little bit. I take a drink of fresh ice water that sits by my bed. I try to see the clock in the dark of the room and the haze of my nearsightedness. I get up to pee, because hey, I gotta go. Then I lay back down to try to fall asleep. Mostly likely to be woken again for meds or more vitals in an hour if I’ve been running a fever.
Perhaps when I am well enough one day in the hospital I’ll have a little fun. I’ll host my IV pole up on the bed, push the call light to say I need a nurse and then just start dancing with the pole until somebody shows up. Thoughts like these keep me entertained through out the monotony of the day. I didn’t get a chance to try this particular idea out, however I did stumble upon 2 new uses for my IV pole that don’t involve dancing.
I was using the facilities one day when the TP was running low. I didn’t really feel like changing the roll because there’s not a lot of room to maneuver the cover open. I did have a spare roll of TP and as I held it in my hands, I realized something. Something that has probably been realized by many people before me. There is a horizontal bar on the pole shaped like 3/4 of a circle that I use to move the pole around. As I sat there, TP roll in hand, I realized the opening between the two ends of the bar is big enough to fit the roll of toilet paper. This serves two purposes for me. 1) I’m already tired and obviously expending more energy in the pooping process. The bar just so happens to be at the right height so that I can rest my forehead on the toilet paper roll. Holding up my head is one less thing I have to worry about and it was actually kind of comfortable to sit there on the pot and just rest my head. B) The bar acts as a great toilet paper roll holder. The one in the wall is a little bit low and the constant wipe/bend wipe/bend process gets a bit old. On the other hand, the IV Pole TP holder is at a great height and I can just wipe wipe wipe all I want. I think I’ll remember this little breakthrough for next time.
Remedial Rob for Uncle Claude
A few of you reading Rob have known me my whole life and one of you asked if it’s a good or bad thing that my bone marrow is recovering since it was producing blasts. Again, you might want to consult Dr. Google for a more informative opinion, but here is what I know from questions I’ve asked.
My bone marrow itself is not producing Leukemia cells. At some point a cell mutated for unknown reasons, reproduced like a rabbit on heroin and all those cells took over my marrow and peripheral blood. It’s this one leukemia cell and all of it’s descendants that has been the source of my Leukemia. The fact that I achieved a first remission means there were no detectable Leukemia cells in the snippet of marrow they took. However some cells did survive my first treatment cycle and that is why I relapsed. Leukemia cells can lie dormant for long periods of time. That is why the disease is so hard to treat. There isn’t a tumor you can just light up with some radio-labeled glucose to see if the treatment is successful or the cancer is gone. Leukemia cells lie dormant for years and then one day just wake up.
So it is a good thing my bone marrow is recovering. The problem is that since my leukemia cells are blood cells, I need to be given chemo in such a way that will kill the leukemia cells. This chemo doesn’t differentiate between good an bad, so it attacks the leukemia, good blood cells and marrow. I receive chemo in high enough doses to put my bone marrow on the brink, but leave just enough life in it to let itself heal and come back enough to be beat down again. Kind of like a version of Dick Cheney approved interrogation tactics.
So during treatment it’s oddly enough a good sign to see my counts drop and stay flat because it means the chemo is killing my cells (and the leukemia is a malignancy of my cells). It’s also good when I produce new blood cells because it means my marrow will be healthy enough for another beating. I had 8 cycles of chemo in my initial treatment. This was supposed to kill off all the Leukemia cells. The hope was dormant cells would activate over time and ingest the chemo. They also alternated between two types of chemo so that surviving cells couldn’t adapt as easily. Unfortunately at least one cell survived the first 8 cycles and over 2.5 years came out of dormancy enough times to produce a relapse.
So if my bone marrow isn’t producing leukemia cells, why are we going to kill it off and transplant new marrow into my body? That’s a good question and something I’m learning so I haven’t covered it well. The goal of this treatment isn’t to kill my bone marrow. That’s the result of the treatment. Kind of like “Death Therapy” I guess if you remember What About Bob. We will cure you by killing you with treatment.
Essentially at this point, current medical knowledge shows that I will not be cured with normal doses of chemo. I may achieve a 2nd remission with my current dosage, but the Leukemia will come back and it may come back more and more resistant. So we need to turn things up a notch. We need to give me a very high dose of chemo and radiation with the goal of killing all leukemia cells once and for all. It’s kind of like cutting off your finger to treat recurrent hangnails. Those hangnails are gone for good, but you’re never going to type the same again. This high dose of chemo and radiation may cure my cancer, but it is so poisonous to my body that my bone marrow will be dead.
One can’t live without bone marrow or at least one can’t live very long or of any quality (well maybe just check Dr. Google. Maybe there’s a bubble boy somewhere without bone marrow, who knows). But in order to return to a quality of life, I need to replace my now dead bone marrow with new bone marrow. Thus the SCT. There is an added benefit of SCT that the new immune system may attack any leftover leukemia cells because it recognizes those cells as foreign. That’s were GVHD comes in because it will recognize all of my cells as foreign at first.
So to summarize, at some point one little cell mutated and replicated. From what I’ve read, that one cell turned into around 1 trillion cells at the point I was first diagnosed. That number is simply amazing to me. (The other amazing thing to me is if I had a dollar for every leukemia cell in my body, I couldn’t even make a dent in the national debt, but that’s a different topic for a different day). The chemo needed to kill those 1,000,000,000,000 cells over 8 months of chemo, but at least 1 little bugger got through. That little bugger used a heroin laden rabbit to reproduce and I relapsed (or something close to that). We will take my chemo up a few notches in hopes of killing the trillion cells again and in the process we’ll have to give me some new marrow so I can play with the wife and kids for many years to come.
The kids help walk daddy to the van. Note all the things Natalie is carrying.Natalie was very sweet today as we were walking to the van. First off, she brought Rainbow Sparkle Heart with her to the hospital. RSH is the bear she built at build a bear and is so named because she is Rainbow in color, has some sparkles on her and has hearts on her shorts. So Lindsey is walking in front with Tucker and Sydney in between us. Natalie is staying by my side carrying RSH as I carry a plastic bag, box of Kleenex and a red Powerade (but no thermos). She looks up and says “Daddy, I’ll carry your bag for you.” But I tell her the bag is to heavy. “OK, I’ll carry the Kleenexes.” So I handed her the box of Kleenex and she worked to balance the load of RSH and the kleenex box.
A little further into the parking garage she has mastered RSH and the box into one hand. She sticks out her other hand and says, “Daddy, I can help you carry your drink.” So I hand over my drink and sure enough she carries that for me to. It was a very sweet gesture that I will always treasure. A little girl helping her sick daddy in any way she can. I love youNatalie Bear.
Tributes on Caringbridge
I hesitate to say this next part, but I know at least one person was confused so I just wanted to clear it up. By all means, if you want to support CaringBridge, please do so. They don’t make any money off of me. You don’t see my page peppered with annoying ads and they have to pay the bills somehow. If you make a tribute (on the right of the page) the money is going to Caringbridge to support their site. It does not go to Lindsey and I. I hesitate to say this because a few tributes have been made and I appreciate the tributes that were made in my honor. I just wanted to make sure there was no confusion in the process as I’ve heard about a little bit of it.
Speaking of Caringbridge
Look for a special announcement coming to a Robstrong page near you.
A Duck Dynasty Prayer
Father God, thank you for my home. Thank you for allowing me to be in my home. The hospital is a necessary part of this journey, but home is a necessary part of my life. It is a necessary part of my family. It brings balance and a safe place to be. It brings routine and comfort to the kids. Thank you that I am no longer fevering and that I can spend time at home. Let me cherish this time and soak it in. Let me not take it for granted, but use it for more healing, more growing, and more peace in my life. Thank you for each precious moment with my family. Thank you for another day.