Updated: Mar 30
Final update end of this page: 3/30 5:28pm
It's been eight weeks since Melisa completed radiation, a span of days that's been much more difficult for her than chemotherapy. Side effects like nausea and pain plagued her, and our expectation of these effects may have masked an issue(s) that caused us to run to the ER last Friday (3/24/23) afternoon. We've been in hospitals since.
Below are some text updates - which I will continue to run until we are home.
Catching Up to Sunday AM
Medications designed to treat side effects of cancer can lead to constipation. Expecting this, we stocked up on over the counter medicine designed to help -- but those weren't working well during the eight weeks after radiation. Four to five days between working bathroom visits makes for stomach pains - which she was experiencing in high doses. That said, the pain seemed too extreme to me as a caregiver.
Those who know my wife may understand that she can be 'stubborn'. I say that without negative implications or intonation - she just has a tendency to "dig in". That quality is a strength that's probably saved our 33 year+ marriage many times over, but it's also challenging at times. Having convinced herself that the pains would pass when her food did - she was determined to ride it out and would not be moved on her position. She grimaced and bore down through pains this way from Wed to Friday last week, all while I begged her to at least call her doctors or let me intercede on her behalf for pain meds. She can give this disturbing, stoic, yet sort of menacing stare in these situations, and I have learned to heed it's warning. It's a strength of mine that's saved our 33+ year marriage many times over, I'm sure.
OTC meds had stopped working, and the pain was so severe Friday afternoon that she couldn't function. She was also growing weaker due to the shear fatigue that comes from having severe pain over and over for days. When the pain level reached a point she started throwing up, I made the call to over-ride her decision to ride it out in spite of her incredible mental and physical fortitude. I could tell she was done, and getting worse... And I think she could, too.
Our Trip to the ER Friday Night
We made it to Payson Banner ER at 11:00pm, and as we entered with me supporting every painful step she had her worst bought of pain yet - something she described later as 'worse that the birth of both of her kids'. That was followed by two solid minutes of throwing up while sitting in a lobby chair as I frantically answered check in questions. Banner medical staff got to her immediately, calmly, and got her hooked up to administer meds. She was so dehydrated that it took three tries for the IV - and she has the bruises to show for it. But meds eventually helped. She threw up again on the way to the CT scan, but quieted afterward and hasn't thrown up again since.
CT revealed constipation, but also signaled potential issues with the gall bladder or bile ducts. The inflammation of her pancreas (likely from radiation) wasn't helping, and was noted as a potential cause. Payson staff admitted that they didn't have the staff or equipment on weekends, and suggested a transfer to PHX. Knowing costs would be high for that, and that we needed to get to our team at Banner Gateway / MD Anderson versus just any hospital in the valley - we checked out AMA (against medical advice) and drove directly to Gateway in Gilbert, AZ.
Walking into Gateway ER feels familiar for us. We know Gateway/MD Anderson well, know the teams here, and felt immediate relief at being 'home' at 'our hospital'.
After several more hours of waiting - the staff here confirmed the constipation issue. Melisa had found some relief through treatment at Payson but had a ways to 'go'. We found out we'd been approved for a hospital room while en-route due to efforts of the Banner Medical Payson team, and are grateful for their efforts. As I write, we remain at Gateway hospital.
Saturday Night, 9:30pm:
We are still in the ER, but have been able to speak to the Doctor here at MD Anderson/Gateway. They don't have full CT results but can see enough to know that there is a potential blockage or stones in her bile duct that are/were combining with constipation to equal the extreme pain/symptoms. They are scheduling treatments to solve for the constipation, and setting up an MRI and scope procedure for morning to go in and look at the 'stones'. Best case it's stones, which they remove during the procedure and relieve the blockage. Worst case, tumors instead of stones - but either way we know what's happening by end of day tomorrow. She will move from the ER to a hospital room sometime tonight. Not sure what recovery will look like tomorrow as it depends on what is found. Full team of GI specialists are engaged and working with our cancer team from MDA. Feels good to have full attention. They also let us eat, so we're much happier. I will stay the night in a hotel across the street as I will be here until she is situated and comfortable in her room (could be late).
Sunday morning, 8:30am:
Melisa is doing pretty good this AM. She and I both got some much needed rest last night, she said the room and private bathroom are great. She had a CT at 2am and has a MRCP/MRI this morning right now -- her blood work from 2AM showed liver numbers are down a bit, which is good coming off of dangerously high numbers. While still high, it's the right direction. We will speak to Doctors later this AM and know more. Thanks to everyone for the constant support/texts/etc and for allowing me to cut/paste to update everyone at once ... we'll update again mid-day.
Sunday update: 11:46am
We just spoke to the doctor here at Gateway, and they are scheduling an Endoscopic retrograde cholangiopancreatography, or ERCP, for Monday. The ERCP is a procedure to diagnose and treat problems in the liver, gallbladder, bile ducts, and pancreas. They are still saying this is likely gall stones, possibly/probably related to radiation cancer treatments. More doctors will consult today and they are looping in our team at MD Anderson to discuss prior to action. They say if all goes well we would go home tomorrow. While things could change quickly and cause further delay, Melisa is ready to go home ASAP.
We just had a new GI doctor update us again: He thinks it's just a narrowing of the bile duct, not even stones. Narrow duct = backflow = pain, solved by a stint to keep it open. Also, he said he knows our GI surgeon and that he would call him to see if he wanted to come in and do the procedure. He has had her twice already through the process, this would be our third scope with him. We thanked him profusely and said that would be amazing, but we trust the team. He just nodded and said he'd see what he could do. They are still trying to solve the constipation problem... And they are concerned that we get that handled, so we/she has a colon cleaning coming. Otherwise, plan is still for action tomorrow per last update.
Monday, 3/27 1:20pm
We got updates this AM that we are here at least through tomorrow mid-day. The procedure she needs is scheduled for tomorrow with a doctor we know. Two problems we're fighting: continued severe constipation and high liver number. Both problems need a solution before we can leave. She's been told she can eat and drink regularly today. She is in some low levels of pain/discomfort dealing with constipation, but otherwise OK and in good hands. Goal right now is to get the procedure she needs that they agree will address the liver problem, get an effective visit to the bathroom, then get home sometime late tomorrow.
Tuesday March 28 8:50am
On Monday, we didn't make much progress as teams reviewed findings and treatment options. We had some serious challenges Monday afternoon as Melisa's condition turned South for the afternoon and pain increased again to its highest levels yet. Serious bloating, pain, vomiting - but by around midnight most of it had passed as pain meds kicked in.
Today, Melisa has a series of procedures designed to both explore and correct what has shown up on MRIs and other scans. She'll be out most of the morning, and depending on how she holds up may have more tests this afternoon. We are here, positive, and taking each moment as it comes to us.
Wednesday 3/29, 10am Update:
Melisa is doing well this AM. She is still getting antibiotics, still on super restricted diet - but feeling good after some sleep last night.
Her liver numbers and bilirubin number have continued to improve over night - dropping significantly.
She is currently having a biopsy of her lower stomach, which will take several days to get results on. She still has some bowel issues which is the main hurdle to us going home, so Doctors have us focused there. Target is to get us out of here tomorrow with a kit and drugs she can use at home.
Please text her directly if you like - she's online and chatty.
Thursday, March 31 - 8:30 AM
Still in hospital this morning, and Melisa is having a slow/down morning. I see many of you reaching out to her on text - she'll probably get to those a little later.
She had another couple procedures to try to get her bowels moving, but we didn't have the success they're looking for - so they performed another CT to try to determine if there's potentially an issue with her lower gut before giving her meds that will really clean her out. We'll have another update mid-morning after we speak to Doctors about the scans and blood tests from last night.
We've made enough progress to be discharged. We're going home. More updates im thin the coming days.