Over the past couple of weeks, my energy levels have been up and down. I usually start the morning with a burst of energy, but by the time I get through seeing doctors, running what minimal errands I have to, and just trying to integrate back into the real world, I have most often wilted like a flower under a heat lamp.
Last Monday, I had a terrifying night in the emergency room back at St. Joseph. I had gone to bed around 9:30 pm, and not long after I'd lain down, I started feeling a pain I didn't recognize radiating down the back and inside of my left upper arm. I tried to ignore it, but as it worsened, I became concerned. The drug I had been taking through IV for six weeks has been known to cause fatal heart attacks, and I couldn't remember the details, but I knew there was some heart risk associated with the blood transfusions I had received a few days prior.
During the 10 minutes it took me to get out of the house once I decided to go to the emergency room, the chest pains started. They were on my left side, and they were growing in intensity by the minute. By the time I got in line to be triaged at the ER, I was sobbing, shaking, and clutching my chest in pain. I was scared.
And I guess I was scaring the other patients waiting in line because they all stepped aside and asked my mom to please go ahead of them for check-in. The tech had to run my EKG twice because I was shaking so badly, but I was told the second one was normal. They did a chest x-ray, took my blood, then set me up on a heart monitor.
It was a while before I would see a doctor, but after some poking and prodding, she diagnosed me with Costochondritis, which is swelling of the chest wall that was likely brought on my my lung infection. The doctor had seen me quickly for a preliminary evaluation earlier in the night because the pain would come in waves so bad, I was crying out in agony. The nurse gave me some morphine in my IV, which made me sleepy, but only took the edge off the pain.
I had to sleep with an ice pack on my chest for a few nights, take pain meds and anti-imflammatories, and the discomfort mostly subsided over a few days.
I had spent that entire Monday on bed rest, and I was now worried that the thing that had kept me going through some of the rougher times in the hospital — getting to attend my dear friend Chelsea's wedding in beautiful Ojai, CA — was not going to be able to happen. "What if I can't go to the wedding," I kept asking my mom in the ER that night.
Alas, I did all I could to conserve my energy over the next four days, and on Saturday, my best friend who had been with me nearly every day in the hospital loaded me and my luggage and all my meds into the car for the hour+ drive out of town.
It was a wonderful weekend in a beautiful and relaxing setting, where I got more fresh air than I could ask for. I had to pace myself at the festivities, and take lots of breaks. I lasted about two hours at the "welcome party" Saturday night, slept all day Sunday, attended the short and sweet ceremony, took another break in my room, then arrived to the reception.
It was so great to spend time with friends and former colleagues I hadn't seen in a while, most of whom were shocked to see me there and couldn't have been more supportive. Everyone seemed really careful not to overwhelm me with all the exhausting questions I am constantly bombarded with as of late. There was lots of polite surprise about how unexpectedly great I looked, for which I was quick to give credit to the lovely Heather and her airbrush tanning skills that rectified my current state of "see-through" anemic skin.
While it was difficult to stay seated at the reception table as my good friends got down on the dance floor, I felt really blessed and fortunate to be there at all. I decided the fact that I was upright was good enough for me.
Monday, I sat in the shade by the pool for about an hour before heading back into town. Tuesday I felt revived by the Vitamin D and all the love and support, but today is another story...
On top of everything else, I've been experiencing some pain associated with a car accident I was in last September. I started physical therapy yesterday, and though it wore me out, I felt some long-awaited relief for about 24 hours. This afternoon, the pain unexpectedly worsened, and seemed to spread. Plus, I've got a Level 8 headache, and Motrin isn't cutting it. (I'm avoiding real pain meds at the moment, because I'm tired of feeling groggy and drugged.)
I also found out today the doctors aren't happy with how slowly my kidney function is recovering after going off the former drug regimen, so I'm being referred to a kidney specialist.
There was some good news when I saw my hematologist (Dr. Thorough) last Tuesday morning after my ER episode. He said my body appears to be making its own blood again, and that as long as it continues after the transfused blood is eaten up (four to six weeks) I will not need the injections of a marrow stimulator he was expecting to need to give me. I may need to receive Iron through an IV, but that is TBD as of now.
When I arrived at Dr. Thorough's office, I was still so weak and shaky from the pain and the drugs Monday night that the male nurse offered to help me walk down the hall to the exam room. When that became an obvious fail, he had to put me in a wheelchair. I hate feeling so helpless, but I guess those are the times I need to remember that in my weakness, God's strength is made perfect.
The latest from Dr. Fabulous (neurologist, for those who may have lost track) is as follows: My next MRI (that will hopefully determine if my brain lesions have turned from active to scarring) is being postponed until my kidney function stabilizes. They have to inject me with a contrast dye during the process, and I guess it would be dangerous at this point.
He's also still seeing signs of possible seizures or pseudo-seizures. At some point I may have to spend a few nights at UCLA Medical Center with one of those crazy contraptions on my head, so they can try to finally nail it down. I am still suffering from mild "tremors" most of the time. I barely notice anymore, but my six-year-old niece and my physical therapist both asked me this week why I was shaking...
The thing that worries me more than the shaking is that I'm experiencing frequent brain delay and/or confusion. I mix up left and right, east and west; I replace a name or word with a different name or word that has a parallel connection in my mind, and I will often stop talking mid-sentence, feeling completely lost as to what on earth I was just talking about. I frequently can't come up with the word I'm looking for, and I don't mean when it's an obscure term, but just some basic part of my every day vocabulary.
Dr. Fabulous says it's quite possible this is an effect of heavy stress, but as a person whose job is rooted in language and critical thinking, it worries me. It's also embarrassing when it happens around anyone other than my "caretakers."
I have yet to be in public on my own yet, and am still not up for driving, but — aside from feeling completely wiped out today — I have been feeling stronger by the day, and I know it will all come back in due time if I'm patient. As someone who was told not long ago that I have two speeds: fast and faster, I hate the waiting. And as someone who is fiercely independent (maybe to a fault), I hate that I have to be babysat.
The nausea attacks are coming with far less frequency, but I still don't dare venture out without Zofran in hand. I do get light-headed staring at a computer screen too long, or queasy checking Twitter or Facebook on my iPhone. So if you don't hear much from me sometimes, that's why.
As I get stronger, I'll eventually get around to answering all the messages I've received. I hope everyone who has reached out to me knows their messages were read, and that I am eternally grateful for them.
Please don't stop praying for me... I've still got a long row to hoe! Dr. Dad Jokes (my primary care physician) told me Thursday I am going to feel like crap for two to three months minimum, because "Amphotericin B is truly the worst, most noxious drug we still have in our arsenal."
He told me I'm the sickest patient he's had in the past six months, and with my presentations being so abnormal, it's a good thing we caught it. Dr. Dad Jokes looked at me, then looked at my mom, and for once very somberly said, "We're very lucky."
Love,
-Molly