We went down to Huntsman on Monday for an appointment with the Oncologist. They admitted him to the hospital, fearing that Tony's back pain may be a sign that the cancer has entered his spinal fluid. Here is an account of the experience so far.
Monday:
Blood draw at 10:50.
Meet with oncologist at 12:30
Covid test at 1:00
Room opens up for Tony at 3:30
EKG around 3:45
(We were told he'd be getting a picc line, starting chemo, getting an MRI and getting a spinal tap)
MRI happens at 10 p.m.
Tuesday:
The doctor that comes in the morning says he sees evidence of cancer in the spinal fluid, and that they will be doing a spinal tap today and putting chemo in to replace the fluid they take out.
Nothing happens.
A different doctor comes in around 2 to update us. He says there is no evidence of cancer in the spinal fluid. We're obviously confused.
A really nice doctor (3rd doctor of the day ya'll) came in and actually explained all the procedures to us (Thank you Doctor Thomas). But he also explained that there had been a miscommunication. It was now 3:00 and when they tried to get the spinal tap team over, they realized Tony's platelets are below 50(,000) and they they couldn't proceed. The Doctors had ordered platelets for Tony and they were actually already in the room about to be hooked up when they realized that by the time the platelets were in, and they waited an hour to take a new CBC to make sure they were above 50, the Spinal Tap team would have already gone home. So they were rescheduling for the next day. The new plan was to give him platelets at 1 a.m.
Tony's wonderful nurse had some words with the doctor that called her about the 1 a.m. platelets and convinced him to wait until after his morning blood draw so they'd know how many bags to use and so that he wouldn't get woken up to many times.
We receive word that they didn't get the MRI of the location they actually wanted to so they scheduled another one.
Tony gets his picc line placed around 4 o'clock. They take the IV out of his hand.
He gets his 2nd MRI at 9 o'clock.
No chemo. No spinal tap.
Wednesday:
They wake Tony up every hour or so throughout the night because his blood pressure is low.
They end up taking his CBC at 3 a.m. and only order 1 bag of platelets even though he was at 21 and a bag of platelets usually only increases the count by 30. They wait an hour, test his blood again, and (shocker) find out he needs a second bag. They give him the second bag of platelets.
Tony is half asleep when the doctor comes in so he isn't able to ask him many questions, and Tammy was stuck in a blizzard trying to get down to the hospital to spend the day there.
(We had noticed in his MRI that it said the head joint in his hip/pelvis was partially collapsed due to lack of blood flow, and we wanted to ask the doctor about it because they hadn't said anything).
At 2:30, they came and did the spinal tap. They replaced the fluid they took out with chemo (cytarabine). I'll put pictures of the procedure at the bottom of this if anyone is interested and not squeamish about needles. (Tony said he doesn't mind showing the pictures since he was so curious about it before it happened to him, but wasn't sure exactly what to expect. Doctor Thomas did a good job of explaining, but a picture is worth a thousand words. Tammy did a great job taking pictures).
They tell us the name of the 2 chemo's he'll be on (the oncologist told us on Monday but this time they wrote them on the board). They are Azacitadine and Venetoclax.
No chemo is given.
Thursday (today):
Tony is exhausted. He hasn't had any breakfast or lunch even though its after noon because he's mostly sleeping.
The doctors came in (4 people) and I asked about the partially collapsed bone from his MRI. The doctor was confused and said he didn't see anything in the report. Doctor Thomas (thank you again) walked over to the computer and pulled up the report and showed the Doctor. He said they'd follow up on it later.
I also asked about a report that suggested he had a TKD mutation because we weren't sure what that meant. He also seemed surprised by this, and asked when the report came through(the answer is yesterday morning). He said he'd confer with the other oncologists and get back to us, but that they don't usually change much for a TKD mutation.
Doctor Thomas came back and we filled out the consent forms for the chemo. (I also want to mention something here. Half the doctors here do not look at me at all, even when I'm sitting 6 inches away from Tony and he's half asleep. If you are a doctor in any field, please don't do this. Generally, the people that are staying day after day with their loved one are also doing everything in their power to help and knowledge is power, and being ignored completely by doctors is very frustrating. Doctor Thomas is the exception to this rule. He has always talked to both of us, and made sure both of us understand the procedures, the drugs, the side effects, and what to expect. He even gave me a handout on the new (to us) chemo drugs so that I'd better understand what they're giving him. I know he'll never see this blog, but seriously, we just really appreciate him when so much else here has been so frustrating).
He said the chemo has been ordered and they should start him on it within the next 2 hours. We're hoping that this will help his severe back pain and his exhaustion levels. The chemo will bottom out his counts, but they are already so low so he's very tired. And once the chemo runs its course, he should be feeling a bit better in a few weeks.
Initially they told us he'd be here in the hospital just to start all the tests and treatments but then that the chemo treatments would continue out patient, but this morning they said he will likely stay in hospital for the entire week of chemo treatments. So we're not sure about that anymore either. I guess we'll see. The intravenous chemo is a 7 day regimen and the oral chemo is a 21 day regimen.
I'll finish with this, we found out the hospital bistro has punch cards so my 10th meal will be free. I wish I would have known about these months ago. To their credit, they have excellent sweet potato fries and fry sauce.
Don't scroll down if you can't handle a picture of a tube going into a person's back.
*
*
*
*
*
*
The guy doing the spinal tap was really nice, and very knowledgeable and he said Tony was an absolute champ. The guy doing the MRI said the same thing. (His images came back text book because he's so good at holding still). In this first picture you can see he's slowly putting the chemo in through a syringe. Tony said the spinal tap was way less painful than a bone marrow biopsy. And he didn't end up getting the headache they warned him he may have, so it's a good indication that they balanced the fluids perfectly. He also didn't hit any nerves so there weren't many long-term effects throughout the day. Tony was pleasantly surprised.
No comments:
Post a Comment