Starting October 24, Teresa began taking her latest chemo: Cabometyx (cabozantinib). She managed 13 days before the heartburn side effect, and by day 13, nausea, became too much for her. We texted Dr. M and got a chemo break for her through her next appointment, on 11/14. The chemo has a long half-life, so it took awhile for the side effects to become somewhat muted as the chemo slowly got out of her system. The heartburn and nausea made it difficult for her to retain foods and liquid, often vomiting to feel better. This, combined with the involuntary anorexia (i.e. cachexia i.e. wasting syndrome), made her weaker and weaker. It also led to dehydration and a severe electrolyte imbalance.
She should have had weekly labs, but her insurance kept denying visits for home healthcare, so they weren’t getting done. The last labs from home health showed sodium dropped to 125 and potassium up slightly at 5.5, but no one said anything about this.
November 14th, she saw her cardiologist and her oncologist. Her cardiologist, Dr. F., drained 750ml off her right lung from her pleural catheter. I privately asked him about surgery because of a doctor I’d had recommended up in NYC (a general surgeon with amazing talent) and he said at this point, he couldn’t imagine Teresa surviving a surgery to debulk the tumor.
That afternoon we went to see Dr M. Those labs revealed an alarming change:
As many of you know, on Wednesday, November 14th, Teresa was taken by ambulance to Bristol Regional Medical Center (Bristol, TN), from the Wellmont Cancer Center. We were told that she could just have months left — but maybe just days. That we needed to have her admitted to the ER immediately to fix her numbers, and to consider hospice.
Her labs were bad overall, but most concerning was sodium, which was down to 115, critically low (range is 135-145) and potassium, up to 6.2, critically high (range is 3.5 – 5.3). Anything higher than 6.0 is dangerous and requires immediate treatment. Too much potassium in your blood can lead to dangerous, possibly deadly, heart rhythm changes.
Originally we considered getting her stable in the Bristol ER and then taking her back to Roanoke before the winter storm hit. But the ER doctor cautioned the temporary medicine would wear off in a matter of hours and she could easily have a heart attack in the car.
I told them to admit her. And we really like BRMC and the doctors and nurses. We’ve always had good experiences there.
They gave her several meds to bring the potassium down, and also worked to bring her sodium up. That part has to be done very slowly, only a few points at a time, or her brain could swell.
On top of this, her blood pressure was really low. I think the worst was around 58/43. Slowly, slowly, with the help of a lot of pressors, they got her BP back up. When I left the hospital tonight to go have dinner, it was up to 102/66. And they’d severely reduced the amount of pressors she was on and it was still holding steady.
Her kidney function, which should be above 90, has been steadily dropping. Yesterday it was down to 24. Her creatinine, which should be between .50 and 1.10 was up to 2.31. Her bilirubin was up to 2.1 (0.3 – 1.2).
Her ureters are being compressed by the tumor. Today, a nephrologist came by to talk about options, and said he’d send people from urology to see us. Two urology NPs came by later.
In the morning, they’re going to either put stents in her ureters, or, if there’s no room, see if Interventional Radiology (IR) can put percutaneous drainage tubes in her back (through the skin/muscle into the kidneys) which will drain into bags, much like the Foley catheter for her bladder. This can potentially allow the kidneys to drain properly. This is a Percutaneous Nephrostomy and you can read more about it here: http://www.uhs.nhs.uk/OurServices/Radiology-scansandimaging/PatientInformation/PercutaneousNephrostomy.aspx
The goal with the nephrostomy is to improve her biochemistry by bypassing the bladder and ureters altogether and ensuring that the kidneys drain completely. If her metabolic numbers level out, it should also help her feel much better. The stents could do the same, but the tumor burden may mean there is simply no room to insert them.
If there is no one at IR who can place the percutaneous nephrostomy, they will run her (by ambulance) down to Johnson City, TN, where there is a Level 1 Trauma Center, and have the procedure done there.
On Thursday we were visited by: wound & surgical care for her legs, nephrostomy, urology, a case manager (who would help make sure T’s insurance approved real visits from home healthcare, not sporadic ones now and then), someone who works with hospice decisions, a dietitian, and wound care again.
Dr. Vance, who was part of her original surgical team, came by. He has ideas about her legs (non surgical). I asked him about debulking the tumor. He didn’t feel he had the skill to do it safely, and does not feel she could survive an operation at this time.
I told him about what’d I’d learned about proton beam therapy with hyperscan at Georgetown (Northern VA), thanks to paperwork sent to me through my Dad from my Cousin Lee. Proton Beam therapy is super pinpointed radiation. And they’re supposedly able to do it there with any tumor in any location. The advantage of this kind of radiation is the radiation beam is tiny. Like pencil point, so it can be directed into specific areas. This could let them reduce the margins of the tumors, pulling them back from the organs they’re nestled up against, making surgery safer. You can read about that here: https://www.medstargeorgetown.org/our-services/cancer-care/treatments/proton-beam-therapy/
Thanks to another LMS patient (online) I learned about Dr. Tomoaki Kato. You can read about him here: http://columbiasurgery.org/tomoaki-kato-md
Like Dr. Greene, Dr Kato is a general surgeon. And he has a very impressive list of expertise and of miles-outside-the-box creative and innovative surgeries. Including a type of transplant surgery which makes immunosuppressant drugs unnecessary. He’s very talented at all sorts of abdominal surgeries. He knows about sarcoma too.
If she can defy the odds and get her kidneys, metabolic panel, and legs under control, and improve her nutritional situation, we can see if she could first receive the proton beam therapy and then see Dr. Kato about surgery. He istaking new patients.
Now, please note that a lot of these are BIG maybes. She still has a lot of turnarounds needed. She’s still very much at risk. They’ve asked her twice about how much she wants to do in regard to extraordinary measures in case her heart stops or something else happens.
She has a long road to cover before any kinds of big treatments could be real life options. But Dr. Vance seemed to think that if she got to that point, she had a chance of surviving radiation and surgery, then these two options sounded like really good ideas.
She cannot be on chemo at this time, and she was only on the targeted therapy for 13 days, so it’d be really hard to know if it started working yet or not. By not being on active treatment, she could start hospice when she does leave the hospital. We’ve been told by more than one person that just because you go on hospice doesn’t mean you have to stay on it forever. Some people improve once they get a few things under control, and come off of hospice.
But it could also be a permanent solution. 🙁
She doesn’t want it to be though. Know that. She’s not ready for this to be the end. Even with as much pain as she’s been in these last few days, she wants to keep moving forward. She’s ridiculously hardy and determined – but she has a lot of obstacles to overcome.
She will be in ICU probably for awhile.
She can have 2 visitors at a time. Please let me know if you want to visit. You cannot be sick. You cannot have been exposed to sick people. You cannot have sick people in your home or immediate working area at your job. She cannot afford to catch ANYTHING.
But if you’re in good shape, she can still have visitors! She’s on strong pain medicine, especially for her legs (the lymphedema got really bad), so she’s a little out of it a lot of the time, but even when it doesn’t look like it, she’s usually paying attention!
There is an ICU waiting area, so if the visitors at any one time are going to go over 2, then if you wait in the ICU waiting area, you’ll be close by, and can take turns sitting and chatting with her. She really loves company!
Yesterday and today she spent time with our friends Kristen and Sara, and again today. Also, today, her Mom and brother drove down from Long Island and had a nice visit with her. They did run into difficulties with the weather, and it’s still not great out, so if you’re coming through any of that, please be careful!
And, yes, as terrible as it is to think about, with everything going on, it could be your last chance to see her. We all hope it isn’t, of course, but unless you will risk bringing sickness to her, don’t putting off visiting her this time.