When I text my husband using my vintage 2006 flip phone I use T9 which finishes words for me. Ostensibly so I can type faster texts. Every now and then this feature works in interesting ways. Like kiss and lips are the same numbers. Cute huh? And how I ended up being called Queen Chubi many years ago. BUT, the most fun for me, and one I’ve actually included in my everyday vernacular is…. you guessed it right? Freakhog. I have now gone so far to text Freakhoging.( This most definitely takes longer. )
Today around 4:00 I started freakhoging! As another mother said in a comment, not getting any messages back from the hem/onc department causes undue stress. But when it creeps close to quitting time the anxiety levels rise exponentially. Even though I realize that when doctors pay the 100+ grand for their MD, not to mention the blood, sweat and late nights, that they realize that being “on call” will be part of their future, I hate to bother them. Maybe it is a deep seated worthiness issue, or maybe I’ve seen one too many doctors or surgeons standing out front of our restaurant taking calls instead of sitting with their families or guests. It is a service that I use sparingly.
Today, after leaving one message yesterday and two messages today for the “phone nurse” who usually returns my calls within 20 minutes I still hadn’t received a call at 4:30. Besides leaving a message for the nurse I also tried the front desk and the “if your child has an emergency ” number….NO ANSWER … it was really weird. Almost like no one was there. I even thought “What day is today, is it some national holiday that I don’t know about?”
On my last attempt to reach someone at 4:30, the phone system had turned itself off and gave the….”I’m sorry we’re closed, if you have any problems please dial. 234982749873 and ask for the pediatric hematologist/oncologist on call.” After I hung up, I said, by george Ima gonna call ’em.
And when I did the operator told me the clinic was still open, but she paged anyway.
After I’d apologized profusely for bothering the man I launched into my tale. Of course it wasn’t any doctor we’d seen before and he’d no idea about our case, so we had to go into details. Some of which I couldn’t remember. Odd, since I used to remember all kinds of details.
“Doc,” I said, “My daughters ANC is 352, I need to know what to do with her medicines.” Okay, I didn’t say that, basically I said, Doctor I am freakhoging that I can’t reach anyone and it is quitting time, and from the calculations on the blood work that I got today in my hometown, not at the clinic, it says that her anc is 352… and then he double checked my math and sure enough… I was right. Imagine that..
Yes, I did just say 352. 352 people. Her platelets are 83k. Hgb in almost normal range, but where did all her WBC go? Obviously they were devoured by the spleen!! From what I hear a spleen’s palate can be quite fickle. Seriously, I have no idea what is going on.
Yesterday when I did NOT hear anything I made the decision to hold her medicine. Does that sound like me playing doctor…. maybe a little bit, but I can always blame my husband. When we started this journey in January 2009, I gave him 51%. That means that even though I can discuss a point, he gets the final vote. That way if any difficult decisions had to be made, or if I disagreed he would take the responsibility for making it. It has worked. I’d highly recommend this percentage based system. So, no meds for her last night. (Actually not on Sunday either.) Her belly was huge, I could palpate her spleen…. does that sound like an excuse?
Okay, the doc agreed hold her meds until next week. Let her recover, and I fessed up about last night and he seemed nonplussed. I did say that if we were in the middle of Delayed Intensive 2 I would not have made that decision but a month away from being off treatment,in this stage the game, 352 is too low. The only way to counteract that is to remove the medicine for short period of time. We’ll be back on schedule on Monday when we go in for her visit. VCR and DEX and then resume the MTX and 6-MP> (This last bit for those that need deets on the meds.
Besides being angry at not being contacted, I feel that we made the right choices and that she will recover from this bout of splenomegaly and from the ridiculously low ANC. BUT >>> though it means that we won’t be leaving the house much and will miss ballet class for the second time in two weeks.
Isa and GG at ballet their second week after starting class in January. You can see Isa’s big belly. This was taken 10 days after her bone marrow biopsy to check for recurrence of disease. Her spleen was quite enlarged but also she’d taken a course of steroids which makes her belly distended.