May 28, 2012
In the grand scheme of my life, this past month would probably stand out as a unique period of time. But normal is pretty much nonexistent around here, and crazy is typically commonplace! Quite a lot has changed since my last update, so I will catch you up on the latest happenings.
A week after my trip to Philadelphia, I had an appointment with Dr. Wilson, my hematologist/oncologist. It was hard to predict how my various specialists would react to Dr. Schwartzman's treatment proposal of a ketamine coma. But Dr. Wilson was on board with this idea. Right now it seems like we are kind of stuck; I am not being actively treated because I am too fragile, but on the flip side I am not improving without receiving treatment. So Dr. Wilson seemed to think that ketamine, which potentially could help many of my symptoms, could be a positive place to begin moving me in the right direction.
But obviously ketamine comas are not fairy tales. There are so many risks to be considered, and unwanted consequences can affect each patient differently. When I had my appointment in Philly, Dr. Schwartzman's nurse happened to be out for the week. She typically accompanies him during appointments, and then stays behind to further explain things to the patient and their family, and to help arrange the necessary followup details. As she was not present for my appointment, someone else scheduled me to return to Drexel in August for my pre-infusion clearance testing.
However, a week after returning home, the nurse called saying I was to be admitted into the hospital in Philadelphia the following day to begin testing and to prepare for my trial ketamine infusion. Hm, didn't see that coming! But upon discovering that we lived in St. Louis, Dr. Schwartzman consented that I should just have my testing performed near home in order to speed up the process. So great, this is even better! Additionally my mom had emailed a recent sampling of my regular blood work results to the nurse, as a complete blood count (CBC) test is required prior to undergoing a ketamine infusion. After a week or two passed with no reply regarding my blood work, I began to wonder if it had been reviewed. I didn't want to have my hopes up and go through the clearance process only to be let down at the last minute. Mom emailed the nurse once again to try and resolve this matter. The response was not favorable; Evidently I am ineligible for both methods of ketamine treatment due to my chronically elevated liver counts.
To be honest, I was very disappointed by this. It had been such a long time since I felt as though a doctor could help to relieve my pain, so I left my appointment in Philadelphia feeling even more hopeful than I would have anticipated. But God is the only one who really knows what is best for me. Every little thing that happens is under His control. Since this form of treatment clearly is not a part of His plan for me right now, I need to accept that. Surely there are other things out there He wants me to pursue... I would hate to miss out on that by focusing on a bit of a setback!
Fortunately for me, there has been such a lot to celebrate as well. Lately it seems that each week has provided its own important milestone.
For instance, on Cinco de Mayo we had a fiesta in honor of my parents' thirty-third wedding anniversary! Once again Ricky Martin was kind enough to favor us with his exceptionally festive entertainment. I do hope that Ricky will excuse my discrepancy, as he is from Puerto Rico, and Cinco de Mayo is a Mexican holiday. But I like to shake my bon-bon to his music whether it is culturally correct or not. And, as the pinnacle of the hoopla, I presented my parents with a surprise piñata, shaped like the number thirty-three! It was especially crafted just for the fiesta by a Venezuelan abuela. Can't you just picture my father blindly bludgeoning away at a candy-filled piece of papier-mâché? Oh, no! In fact there would be no bludgeoning that evening. Not to fear, that masterpiece is safely on display in Krista and Tim's kitchen! While I performed quite well in Spanish class at school, I never quite mastered the skill of rolling my R's, so please allow me this literary liberality: ¡Arriba! (Translation: Wahoo!)
And can you guess who just celebrated her first birthday a few days ago? Yes, Miss Alice Eloise is one year old! I am so thankful to have that little one. We kind of took a roundabout way of finding one another. A week before Alice was born, I brought home a beautiful red Labradoodle with the intent of training her to be my service dog. I loved that pup with my whole heart. But with a sad form of irony, the puppy had rare medical issues, and there was no way I could provide her with the proper care she would require. Thankfully there was to be a happy ending for the both of us. The breeder found a very devoted family for the little dog, and they had a "special needs" Poodle as well. And while at the time I did not think I was ready for another puppy, the moment I met my baby Alice Eloise, I was done for. She's had me wrapped around her little paw ever since! Her birthday brought absolutely beautiful weather, so we took a couple of strolls, and played a game of "Sit, Stay, Come" on her long lead outside. But I believe her favorite part of the day was chowing down on the doggy birthday cake I baked for her. I made an extra effort to spoil her even more than usual on her special day... Have I mentioned that I am wildly crazy about that Doodle? And maybe by her next birthday she will be a full-fledged service dog!
Until we are able to return to our own home, Alice and I are really very content here at Krista and Tim's house! In addition to enjoying the family time, we both have a friend in the neighborhood. Tiffany, one of my very best friends, is home from college! Right now we are only 1.3 miles apart by road (I Googled it!), and approximately 0.07 miles if trekking through the previously untrodden terrain, a mode of travel heretofore known as cutting through the neighbors' yards. So my Double Doodle and I have been taking walks with Tiffany and her Maltipoo, Tuffy. It is so nice having them as our neighbors!
Since we have been away from home, Alice has also discovered the wonders of indoor plumbing. The luxurious porcelain bowl that she found in the bathroom has rendered her meager water dish useless. In her opinion, at least. But I am her mother, and I am determined to revert her to the hygienic pup who once drank from her own bowl! Even if it means that I must make dramatized performances of obtaining her water supply from the bathtub. Obviously, I am in control of this situation.