by Harvey Gould
On January 3 (officially Day 1 of the hospitalization though I’d had apheresis the previous evening), our assault on my AML began in earnest. No more Mr. Nice Guy. On Day One I was put on a 24/7 regimen of Cytarabine and on IDA Rubicin that was administered on Days 1-3 and took only 20-30 minutes to transfer, but IDA has a fairly long lasting and nauseating kick, not just for me, but also for the monster we were out to kill. I also received Dexamethasone on Days 2-5. It is a corticosteroid with many uses, one of which is to help control nausea, hopefully only for me and not for the monster.
At long last we were into full fighting mode and we intended to be ruthless. It’s a strange sensation, recognizing that to win this war you must assault yourself, but knowing that in doing so, you are also putting out the dragon’s flames.
You wouldn’t expect General Patton to be stirring his troops into battle by saying, “Now, we intend to do serious damage to each and every one of you and we know that you’ll take on your wounds with good grace, but you must know that with each blow we inflict on you, we intend to do more serious damage to the enemy. So, stand by you post, take your chemo and other drugs, knowing they will make you sick and expose you to mortal danger, but accept your lot happily, understanding that what you are about to endure is all in the path to a glorious victory!”
But that is the simple reality of this fight. Until a modern day “Bones” of Star Trek can come up with his wonderful magnetometer to wave over our bodies and thereby instantaneously rid us of whatever insidious disease we carry within us, we have to attack the beast by poisoning ourselves and knowingly placing ourselves at terrible risk, but at the same time offering ourselves a possibility of a whole new lifetime of healthy rewards
I was ready for the assault.
Luckily, I’d had my double port inserted just six days prior to the hospitalization. (Rack up another lie by a doctor about pain, in this case, the surgeon who implanted the port: “You’ll feel a little discomfort for a day or so. Just take Tylenol.”) A little discomfort? Bullshit. It hurt like hell for two solid days and nights. Hey buddy, I thought afterward, Let me cut into your aorta, thread tubing down there, punch a hole in your chest and implant and then stitch in a double port, and let’s see what you think counts as “a little discomfort.”
Meanwhile, it’s been a Godsend to have the port because the chemo, blood draws and all other IV drugs are administered through it and thus there is no need for the use of peripheral veins. With the seemingly endless times they need access for those various uses, it would be impossible to conceive of undergoing this process without the benefit of a port (some choose to use a pick, but from what I understand the port, and especially a double port, is the way to go if you’re in for the long haul or know that you are otherwise going to be requiring multiple accesses.)
However, accessing my port the first time wasn’t exactly a bundle of joy though I now know that it was just my bad luck to have drawn a heavy-handed-macho-jerk nurse to be the first to access it. He proceeded without applying any numbing gel to my chest and gave no warning what to expect or when he was about to insert the needles. When he did insert them, (you do so one at a time) he seemed to be acting more akin to a steel-driving-John Henry, who thought he’d been tasked with the job of hammering a steel drill into rock rather than softly inserting needles into a patient’s chest, except that his fancied “rock” was my chest and the hammer was his fist pounding down the damn needles.
After the assault had ended and my body had returned to a stationery position from having been bounced into the bed and then finally come to rest the nurse said, “Now, that wasn’t too bad, was it?”
“I’d say it was a walk in the park—compared to having a tooth pulled without an anesthetic.”
“That’s me. I’m just a regular jokester.”
Needles are switched out every seven days. The reason I know that it was just my bad luck to have drawn a bad-ass nurse for my first access is that the nurses who have handled the subsequent switch-outs (and by now that‘s occurred three additional times) each bothered to put a numbing gel on my chest, and let it work in for 30 minutes or so while they’d do other chores. Then, generally they provided a simple guide as to what was to happen and to give simple instructions to help make the process go as smoothly as possible: “breathe in deeply, now blow out hard while I’ll remove a needle”—and out would come one needle. “Good. And again breathe in deeply then blow out hard,” and out would come the second one.
When it was time to insert the new needles, they’d announce that they were doing so, would provide a “three, two, one countdown”, instructing me to take a deep breath in on “three, two” and give a big exhale on “one” and hold it as they would then insert one needle, They would then repeat the process to insert the second needle.
Not exactly rocket science, but since we weren’t launching rockets we didn’t need an astrophysicist to oversee the process-just a compassionate nurse and there are plenty of them. The stinkers are the exception.
Meanwhile, whether you’re someone who is having your port accessed for the first time, or you’ve not had a sufficiently positive number of prior “switch-out” experiences, don’t hesitate to make known that you are concerned about controlling pain; that you’ve heard there is a numbing gel that can be applied to the chest to help dull things down during a needle switch-out and that you’d appreciate anything that can be done to help make the procedure as comfortable as possible.
As MPN patients we’ve advocated for ourselves all these years. It’s no time to stop advocating when we’re hospitalized.
Once I was on the big-boy chemo, it didn’t take long to see my numbers starting to retreat. By Day 8, my WBCs were 12.5; by Day 13, they were 1.0. (Biff, Bang! Kazowie! Take that you villainous scum!) Similarly, by Day 13 my neutrophils had dropped from the 90s to 0.5. I don’t know if it is a generally accepted standard, for neutropenia but at least at UCSF, you are considered neutropenic when your neutrophils are at or below 0.5% and at that level you are not permitted to eat any food from outside the hospital’s own food service and you must wear a mask in the hallways. At these very low levels your immune system is shot. Not a good time to be visited by someone with a cold and, on that score, they do a pretty good job of screening visitors before allowing anyone access to your room.
There are always drug interactions that need tracking so although my Hemoglobin had dropped to 6.8, on Day 4 they withheld a blood transfusion until my WBCs had dropped to a certain level on their downward path out of concern of some kind of “collision” causing a possible cardiac event. Perhaps complicating matters on that front, yours truly, Mr. Frankenstein’s Monster, has CAD, hypertension and two implanted self-eluting stents. Why make things easy? At the same time IDA Rubicin can do damage to the heart at certain levels and unlike some other drugs, your body does not shed the IDA, so the doctors must be mindful of its cumulative level, particularly if you have cardiac issues.
So, as things were progressing in some ways in a positive vein (no pun intended), inevitably there would be setbacks—and some were coming.
Take me back to the Contents
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