How Do You Measure, Measure a Year?
by Amanda Grabler, Copyright © August 2018
Five hundred twenty-five thousand six hundred minutes
Five hundred twenty-five thousand
Journeys to plan
Five hundred twenty-five thousand six hundred minutes
How do you measure the life
Of a woman or a man?
–Seasons of Love from the musical “Rent”
At this time a year ago, Sara (a dear friend of ours), my parents, and I were waiting anxiously (beyond anxiously) for Teresa to get out of surgery at Bristol Regional Medical Center (BRMC), in Bristol, TN, with Dr. T.C. Greene. My parents had driven down from Roanoke that morning. I’d spent the night feeling ill, crying on and off, and generally not sleeping.
A few days ago, on August 22, 2018, I realized it was the 1 year anniversary of the last “normal” night of sleep we’d had. I put normal in quotes because … we knew something was pretty wrong, but we just didn’t know how wrong it would turn out to be. On August 23, 2017, Teresa had her appointment with her PCP, Sally Blackburn, FNP, in Bristol, VA. Sally is one of the nicest people you will ever meet. So glad to have her through all of this. She knew something was wrong looking at Teresa. She told me, “There’s a lot to be worried about.” And she was right. Teresa looked like she was pregnant with full-size, full-term triplets.
Teresa had been trying to lose weight. She thought that was her only problem. Various problems had minimized her free time for the gym over the last two years. Last summer, she’d started to lose weight, and she worked on reducing how much she was eating. Somewhere along the line, the amount she could eat became physically reduced by the unknown, growing tumor, pressing against her stomach. But she didn’t realize this. I was in Roanoke a lot of the time, for work, but I will always regret this. Sometime in July or early August, she told me what she was eating on a general day, and my best friend, Vanessa, and I, worked out that it was an alarmingly low amount of calories, protein, nutrients in general. T said she just couldn’t eat more.
She still had pretty decent energy at the 2017 Highlands Park Festival. It was obvious she’d lost weight — in her face and extremities, but her abdomen seemed larger to me. And hard. Harder then it had been since May. In hindsight, we recognize it was tumor plus fluid. When I’d looked things up online, I got suggestions about “hard belly fat”. Not once did anything come back with, “it might be cancer”. What a time for Google not to suggest that! But her color was still good. And she was in good spirits.
The week before her appointment with Sally on 8/23/17, her color got bad. Pale. Her abdomen became ridiculously larger. Her legs became so swollen she could barely stand.
After Sally’s exam and labs were drawn, she sent us over to BRMC for an emergency ultrasound and CT.
That night, as I was getting ready to go to the store, Sally called us. “The radiologist can’t find your uterus. There’s just a mass where it should be.” She told us he suspected cancer. Probably uterine carcinosarcoma. You know me. I looked it up. It looked pretty grim. Frightening. CANCER. It’s also highly aggressive and is 2 types of cancer in one.
She told us that they’d put in a referral to an gynecologic oncologist in Kingsport, TN. We cried a lot. Called parents. Cried more.
The next night, as I was getting ready to go to the store, one of Sally’s colleagues called us. T’s labs were back. We needed to go to the hospital of our choice right way, and go to the ER for an emergency blood transfusion. Teresa’s hemoglobin was critically low, and also we were told to ask to speak to the oncologist on call. They hadn’t heard back from their referral and said it couldn’t wait.
Although the Abingdon hospital was just minutes away, it has a reputation, and not a good one. We drove the 30 minutes to Bristol. They took a look at her and got a wheelchair. She was triaged in an ER room. They did labs and a cross/match for blood type, got a transfusion going for 2 units.
It can vary a little from lab to lab, but the range we got for normal hemoglobin was 11.1 – 15.9 g/dL, Teresa’s was at 7.7.
Several of her labs from her appointment with Sally were low or high. Not a lot was normal. She had protein in her urine (not good), and the appearance was flagged. Her metabolic panel, oddly, wasn’t too bad. They did a TSH panel (thyroid). It was high. (Dr. Musgrave ran this panel again in December of last year and it was in range.)
Sara joined us. I don’t know how I would have made it through these days without her.
Finally, after several hours, Teresa was admitted and moved upstairs to a room. It was a long, scary night. At one point they did a doppler ultrasound on her right leg, which was the worst of the two, to check for clots. There weren’t any. Her blood pressure that night was 176/115 at its worse. Sometime during the transfusion it dropped down to 151/98.
I couldn’t sleep. I was so afraid she was going to die. I ended up spending several hours out in the hall with the night nurse. She was so nice and said I was welcome to sit with her while she worked. And she asked and answered questions, and told me about herself. And I wish I could remember her name so I could thank her again.
The next morning, we met Dr. Greene. He was a general surgeon with nearly 30 years experience in gynecology. He wasn’t in oncology, but he said he could operate. He fully supported a second opinion but said he genuinely didn’t believe Teresa would survive even another day without surgery. That her body was decompensating too rapidly.
Teresa, at this point, would have paid anyone to operate. She was so uncomfortable.
There was something about him that we trusted and found him very likable – especially the more we got to know him over the next several weeks. We were very sorry when he retired at the end of the year.
He said he had a few patients he had to take care of, but then he could have her in surgery that afternoon. We agreed.
It was a frantic time of getting ready. We didn’t have a POA or anything, but I’d find one online. Basic, but it worked for this emergency. The hospital provided a notary. I really have no idea how I managed all this, as scared and shaky as I was.
They also asked if T would sign a release for an open gallery. It was at this point we really realized it was a teaching hospital. We didn’t mind. From what we heard, it was a VERY full gallery. At least as of August 25, 2017, it was the biggest tumor the hospital had ever seen.
It was finally time to take her down. I was so afraid I’d never see my Teresa again. So afraid.
I was given a pager and told where to go when it went off. There were… nurses, I believe, at the window I was sent to when the pager would go off. They would provide me with updates. She was in pre-op. She’s in the operating room. They’re getting started now, etc. Finally she was in recovery, where she would be until she went into ICU. At this point, we could now watch a TV monitor which would tell us where she was. She was supposed to be moving to ICU within 30-60 minutes.
Dr. Greene came out and talked to us. I wrote about it in CaringBridge, so you can find the details there. The upshot is that from the looks of the tumor, he would be very surprised if it came back benign.
And waited. And got more and more anxious.
Finally Sara went through the doors we’d seen other patients’ families be taken, to find out where the hell Teresa was.
It turned out they’d taken her for a post-op CT but never told us!
Sara took me back to Teresa’s ICU room.
At first I thought we were going to be waiting in the room for T to come back because I couldn’t see anyone in the bed. Then I realized, Teresa was in the bed. She was so much smaller after the surgery that I couldn’t see her in the bed.
That was alarming in and of itself.
Dr. Greene had told us the tumor was, I believe, 32.5 cm. What they were able to resect was 30.5 x 29.0 x 23.0 cm. Teresa lost a lot of blood in surgery, and required 2 more units. (And another post-op.) So he couldn’t resect it all. He left a small piece, and her cervix. This meant he couldn’t get clear margins, but he said he didn’t see the point of getting clear margins if the patient dies.
That small piece is what later regrew into what she’s dealing with now. On her last CT, the baseline one she had before starting Yondelis, the primary tumor measured 26.4 cm on the longest side. There’s a secondary tumor now. On her last CT, the baseline one she had before starting Yondelis, the primary tumor measured 26.4 cm on the longest side. There’s a secondary tumor near her liver which is 16.5 cm on the longest side, and a nodule, now measurable at 2.1 cm.
From October – November 2017, she was on gemzar/taxotere (gemcitabine/docetaxel). She lost her hair. The tumor grew. The gemzar gave her kidney failure. (Her kidneys came back after 1 1/2 months off of chemo.) She had a lot of blood transfusions.
From January 2018 – June 2018, she was on doxorubicin/olaratumab (adriamycin/lartruvo). Tumor growth slowed, but she maxed out on her lifetime limit of doxorubicin (it is a cardiotoxic chemo; it can cause heart failure).
On July 5, 2018, she started Yondelis. On August 31, she will have the CT which will tell us if it’s doing anything.
(If you go to this page, you can see a timeline of events.)
In March, we received a phone call from an incredibly nice woman named Teresa Darr. She’s an Oncology Case Manager and is helping us through a program from KVAT through Teresa’s insurance. I’m so glad she’ll be able to continue to help us as long as Teresa is on COBRA. She’s been incredibly helpful, and able to answer so many questions, and look into things for me as studies are released as possible treatments for leiomyosarcoma. Most of you know I am not a fan of the phone, and generally uncomfortable on the phone, especially with people I don’t know. I was instantly at ease speaking with Teresa. I’m so grateful to her, for everything.
When I’ve updated CaringBridge, I’ve shared facts. I’ve strived to write the medical information in a way that the majority of you can understand, and I’ve told you, generally, how Teresa is faring. I don’t share a lot about the other side. And most people don’t ask. They ask how Teresa is doing. Those of you who do ask how I am? Who’ve been willing to listen to the painful diagnosis I got this year? Thank you. I haven’t shared it on Facebook, or much, because I’m too afraid of getting that 1 comment back from someone about being glad that at least it’s not cancer. And, of course. But that doesn’t mean that it still isn’t physically painful. I can’t do much of anything about it. And beyond wanting it to go away for my own comfort, I want not to have this because it can make it harder at times for me to help Teresa. And she comes first to me, ahead of myself.