Kill The Paps-Episode One-Update Two

Well, we are almost two weeks post infusion #2.  Here’s the update on things…Avastin style.

Infusion #2 had drama….pure “look at me” drama.  Things started well….IV slipped in on top of the hand on the first try…praise hands.  Looking back, the next part should have been my “sign” of how things would go, but I was still focused on the one stick. Nurse had to really massage the blood out of the IV for my labs.  She had just finished up, and that familiar “hmm…I’m nauseated, I’m having cold sweats, is the room spinning” came over me-I looked at her and quietly mumbled, “you need to check my blood pressure.”  I believe it was something like 61/34.  Nurse, “I have an emergency in here.”  Legs go up, chair laid down, fluids hung….yep…I remember this….but the last time, it was after seven large trial tubes of blood…this time, it was after three very small routine lab vials.  Several minutes later, we start to see progress and nurses seem less frantic.  I, on the other-hand, have that post BP drop hangover.  Can I just nap now?  Hilarious, but old school nurse was in charge of me this AM and at some point, I still had to get to clinic.  After my vitals assured them I was not headed to the ICU for monitoring, in comes a wheel chair to take me to clinic….yes….I was that patient.

Clinic went well…labs all good….nothing that would prevent me from having next infusion, so back to infusion center.

Well, maybe the drama just prefers the infusion center, but drama showed back up.  After a rather long wait for drug to come up, it was time to hang that little bag and get the day finished.  My veins…well…they had another plan.  IV failed.  Pain when trying to flush, tender to the touch…..I was defeated. Then began the drama to find another vein that met Emory protocol.  Seems that sweet vein right in the crease of your arm is a no go for these drugs.  Thankfully, the nurse thought ahead (because that sweet spot in the crease is where the vein was going to cooperate) and inserted IV just above that crease….this allowed us to appease the protocol eyes for that day.  An hour later, and the show was done.

What did I notice this infusion?  No headache this time, but I was fatigued for two days.  It’s not a sleepy sensation, just your body is tired.  I’ve still not had any mucous plugs for about three weeks now.  Coughing is down….whether it’s related or not…unsure…but it’s down.  Cleaning my inner cannula is down as well….maybe two or three times a day.  I noticed some very slight air sneaking out around stoma site, and that was new….and I know there were some papilloma in that area…could shrinkage be allowing occasional air leak? Little things, big questions.

I head back in next week for #3, followed by first treatment scan two weeks later.  If not for the IV issues and BP drama, it’s really been a fairly easy process.  Infusion staff and my oncology team are wanting me to consider a PORT.  The order is in, and it is up to me now.  Seems like a big step given the frequency intervals of my infusions, but one I know I should at least consider.  I worry about the PORT infection risk, but I also know if I’m on this drug longterm, plus lab draws, scan contrast IV’s, and IV’s needed for an occasional procedure to keep airway open….maybe I get/will get stuck more than I realize.

That’s where we are today.

Today’s Kimism:  None of this is a choice.  No one with born with a chronic condition has made a choice to be sick, to seek healthcare (death or healthcare isn’t a choice)…..in this era of healthcare being this huge partisan political issue….be kind, have empathy, understand for those in the fight-it’s not a choice.

2 thoughts on “Kill The Paps-Episode One-Update Two

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