Out of Gas…And Patience

My tank has been empty lately. I’ve had little energy or enthusiasm for writing, cleaning, dog walking, or even getting out to a movie. I’m not sure if this is post-op fatigue that is normal for a month after neuroablation, or if it’s related to the stomach bug I had (that may still be lingering), or if I’m just worn out from all this cancer bullshit.

Photo on 4-25-17 at 9.41 AM #2Whatever it is, I’d like to get myself out of this funk. So I brought the Macbook along to oncology today to force myself to write and I’m currently sitting in the chemo chair, getting my Herceptin and Perjeta infusions. My oncologist, Dr. K., is on vacation so we met with the oncology nurse today. She’s concerned about my white blood cell counts being a little low, so I’ll be back next week for more bloodwork to check on things and to get my Xgeva shot (a medication I receive every few months that keeps my bones strong).

I also had a CT scan of chest, abdomen, and pelvis last week, and a bone scan. All showed no progression of existing metastases and no new involvement, which is great. Three cheers for Herceptin and Perjeta getting me to another four month scan milestone with minimal side effects (mostly fatigue…but that’s what naps are for). From the neck down I seem to be doing really well.

But how am I doing from the neck up, you ask? Well, I was supposed to have another post-op brain MRI at Yale this Thursday to check my progress, but my health insurer (Cigna) has denied coverage. Cigna says I have to wait three months until they will cover another MRI of my brain, even though my neurosurgeon Dr. Chiang appealed the decision with her clinical rationale. So I did what people do these days to get their customerservicecustomer service needs met – I bitched about it on Twitter. Cigna’s social media manager emailed me within 5 minutes of the tweet and asked me to send them further details so they could “look into it.” We’ll see what becomes of it. It would be nice if the insurance companies would honor my own doctor’s recommendation over some random benefits management M.D. who has only a surface level understanding of my individual case or needs.

In completely unrelated and much happier news, Jasper came home from school yesterday and told us he’s been asked to go to junior prom with a classmate. Unfortunately, prom is this Friday and he doesn’t own a suit or sport jacket, much less a tux. But that’s a dilemma that’s fun to fix (although you should ask me how much fun I’m having when it’s Thursday night and we’re still running all over Connecticut looking for formalwear).

Weekend at Brigham’s

We had a surprise overnight stay in Boston last weekend. On Saturday, we drove Jasper to Logan airport for a spring break trip to Arizona to visit a friend. After that, we took Chris to dinner for his birthday at a spot near Fenway. The plan was to head home to Old Saybrook after that, but it turned out my body had other ideas.

Near the end of our meal, I started feeling quite sick. I was going to head to the car to lay down but realized I wasn’t going to make it that far. I put my head down on the table to try and collect myself, and next thing I knew, I was waking up with Tim holding me. Much to my chagrin, I then proceeded to throw up all over his dinner plate (we left the waitress a very large tip).

To try and make a long story short, we thought that I may have experienced another seizure. An ambulance came and the EMTs wanted me to get checked out given my recent neurosurgery, so they took me to the emergency department at Boston’s Brigham & Women’s hospital. But when blood tests were run and my mental status remained pretty much unchanged (i.e. no memory loss, confusion, or balance issues like I usually have during and following a seizure), the consensus was that I fainted because of dehydration and low blood pressure.

benegativecatThe dehydration was likely due to the fact that I’ve had bathroom issues, nausea, and overall blechiness since last Monday. When you are stage IV, every ache, pain, and other discomfort immediately makes you think that a) the cancer is spreading or otherwise flaring up, and/or b) you are having side effects from treatment. This time it may have been the result of a garden-variety stomach bug, or what my friends with diabetes like to call being “real people sick” (i.e., sickness not related to their chronic illness).

At any rate, the doctors wanted to keep me overnight for testing and observation, so I was moved to a single room with a recliner for Tim on their observation floor. They ran a slew of lab tests, a CT scan on my brain (just in case), and a cardiac stress test. One of the potential side effects of Herceptin and Perjeta, my immunotherapy treatments, is that they can cause heart damage, so they wanted to be sure that I hadn’t fainted due to an emerging heart issue. While some of my blood tests were a little off due to the dehydration, I passed the stress test without a problem. A few bags of fluid, some supplements, and lots of Zofran later, and Tim and I were finally on our way home late Sunday afternoon.

Props to the capable and compassionate staff at Brigham and Women’s, who made sure we were both taken care of and comfortable. And the floor was blissfully quiet, such a rarity in hospitals but so important as it let me actually sleep the night I was there. I will definitely be giving them some love when the patient satisfaction survey comes in the mail.

And even bigger props to Tim and Chris for helping this poor old lady out. Tim, I couldn’t get through this without you, and I’ll try to get us through the rest of the spring without you spending another night in a hospital recliner. And Chris, we owe you a proper birthday dinner.

Coming up next week, I have a bone scan, CT scan of my body, and an echocardiogram (to follow up on the fainting incident). I’ll keep everyone posted on my progress. My motivation to write has been low lately, mainly due to the way I’ve been feeling, so I’d really like to shake this bug soon.