rowyn | Entries tagged with cancer

At the end of June, I had to switch health insurance providers because COBRA ran out on my existing insurance. I purchased new insurance for Lut, because ever since he got on Medicaid four years ago, I have feared he will require a treatment or a provider that won’t take Medicaid. (I am seriously questioning the wisdom of this choice.)

He started a course of Revlimid and Ninlaro on July 5, and I made sure to order the medication before the end of June because I didn’t want the first thing I did with a new insurer be “order $25,000 of specialty cancer meds.” I didn’t know if Medicaid would pay for the drugs or not (basically, no one knows the answer to these things until they actually try). And unlike clinical or hospital treatment, which you receive first and deal with paying for later, you can’t get medicines without paying up front.

But you can only order a month of these incredibly expensive drugs at a time. This is for good reason: Lut’s dosage was reduced this month, for example, so he can’t continue to take the old capsules (the capsules are not divisible, and they are sufficiently hazardous that, for example, pregnant medical professionals are not allowed to handle them.)

This meant that we had to get a new round of medications to start Lut on as of August 2.

A timeline of the saga!

July 13: Cigna sends us a pre-authorization letter for the Revlimid and Ninlaro prescriptions, to let us know they will be covered.
Friday, July 23-ish: Sarah Cannon Cancer Center sends the prescription to to CVS Specialty Pharmacy.
Wednesday, July 28: I call CVS Specialty Pharmacy and spend ~25 minutes scheduling delivery for Friday, 7/30. In the evening, I fly out to visit Terry. I give Lut his insurance cards in case he has an emergency (I usually carry them because I’m always with him when he sees a medical professional.)
Friday, July 30, 6PM Central: CVS Specialty Pharmacy calls to say that they do not take our new insurer, Cigna. Cigna has their own specialty pharmacy, Accredo. CVS Specialty Pharmacy does the best they can to transfer our info to Accredo.
I call Accredo. The first person at Accredo transfers me to a new person who works with specialty meds. (From here on, assume that any call to Accredo required talking to a minimum of two people unless otherwise specified). They eventually conclude that they know about Lut and have his Cigna information, but don’t have his Medicaid number. They know about the prescription from CVS, but they can’t fill it without the clinic sending it to them directly. (I suspect, but do not know, that this is a regulatory requirement.) The clinic is closed, and will not re-open until Monday. They ask when Lut is supposed to start taking it. “On Monday,” I tell them.
I don’t have Lut’s Medicaid info. I email him to ask him to call Accredo and give it to them.
Saturday, July 31, night: I check my email and discover Lut sent me the Medicaid number and asked me to call Accredo. Accredo is already closed.
Sunday, August 1: I call Accredo. They are not open on Sunday.
Monday, August 2: I call Accredo, and give his Medicaid number to them. The person taking the information is confused and upset that Medicaid only has a member ID, and not a slew of other numbers like private insurers.
I call the clinic and leave a message that they need to send the prescriptions to Accredo.
Tuesday, August 3: The clinic returns my call. They will send the prescription to Accredo tomorrow.
Wednesday, August 4: I get an email from Cigna that they have “new documents” for Lut. I check Lut’s account, and it shows the Ninlaro with a $7900 co-pay. The co-pay is exactly what I expected: the remaining out-of-pocket for the new insurance policy. I anticipate that either Medicaid or Celgene’s grant program will cover the co-pay.
I call Accredo. They have the prescription but Missouri state law requires that it be authorized by a physician, and the clinic put the nurse practitioner down as the prescriber instead. They ask when Lut is supposed to start taking it. “Two days ago,” I tell them.
I call the clinic and leave a message asking them to get Accredo additional information.
Thursday, August 5: The clinic calls me back to say they got Accredo the information they needed.
I call Accredo. Accredo says they have the information they need but they’re waiting on authorization from the insurer. I remind them that Lut also has Medicaid. Accredo: “He does? We don’t show that.” I give them the Medicaid number again. Accredo says it takes “a day or two” to get the prescription approved and filled, and they will call me when it’s ready for scheduling. They ask when Lut is supposed to start taking it. “4 days ago,” I tell them.
I take pictures of Lut’s insurance cards and store them in EverNote, so that I’ll have them on my phone for future reference.
Monday, August 9: I call Accredo and ask their automated system for a status update on the order. It is “processing.”
Wednesday, August 11, 10AM: I call Accredo and wait on hold to talk to a person about why this is still “processing”. After being shuttled through a few people, I reach a rep who tells me: “It takes 5-7 business days for a new prescription to go through. But I’ll mark it as ‘Urgent’ for you. When is he supposed to start taking it?” “9 days ago.”
I call the clinic to ask if they want to reschedule the 8/20 appointment that was supposed to be ‘after you finish the next course of Revlimid’ and will now be -- at best -- after a week of it. I leave a slightly hysterical message to this effect.
The clinic calls back to say that they’ve been monitoring the prescription and they had last called Accredo on Tuesday about it. Accredo had told them ‘we’ll mark it as urgent.’
Thursday, August 12, morning: A bot from Accredo calls me. “We’re calling to schedule your order. Wait, we can’t schedule your order. You need to talk to a person.” It puts me on hold for several minutes, then gives me a number and asks me if I want to call back or stay on hold. Me: “sure let's hold some more because lord knows if you'll have any clue why I'm calling or what I need if I call back. Since you haven’t told me why you called.”
I hold for several more minutes, and am put through to payment options.
Payment Options: “I have no idea who you are or why you are calling us.”
Me: gives them all the information about Lut and herself
Payment Options: “The system says we’re waiting for prior authorization.”
Me: “you know, the insurance co sent us prior authorization on July 13”
Payment: “Oh yeah, we show that for July 20. Let me put you through to an expert on Revlimid & Ninlaro.”
I hold.
Expert: “We're waiting on prior auth”
Me: “I really don’t think you are.”
Expert: pokes more
Expert: “Wait we have authorization. We can send you the drugs! But oh ... there's a $7900 copay”
Me: "So he has Medicaid”
Expert: “He does? We don't show that.”
Me: gives Medicaid info to Accredo for the third time
Expert: pokes system some more
Expert: “So Ninlaro shows no copay now, let me re-submit the claim on Revlimid ...”
Expert: “There's no copay on Revlimid either now?”
Me: “Yay? I wish I knew why.”
Expert: “yeah me too. I will put a note for Scheduling to call you to schedule delivery.”
Thursday Afternoon: The clinic calls me. “So I just got off the phone with Accredo and there’s a $7900 co-pay on the Revlimid.”
Me: “I wish this surprised me in any way.”
Me: “So he’s got Medicaid and also there’s a grant program for Revlimid so I’m not sure why they can’t charge the co-pay to one or the other of those.”
Clinic: “I’m gonna call our sales rep contact with Accredo, but he might be gone for the day. I’ll call you back tomorrow with whatever I find out.”
August 13, Friday, morning: Accredo bot calls: “We need to schedule a delivery. Oh wait, we can’t. Let me put you through a person.”
Me: “Is this just going to be yesterday morning all over again?”
Accredo bot: ¯_(ツ)_/¯
Me: holds for a few minutes
Accredo rep: “I know who you were called regarding”
Me: “Woohoo!”
Accredo rep: gets standard confirming info from me “Okay, so we got your Medicaid verified. You don’t owe anything for the meds.”
Me: “Yay! Does that mean we can schedule delivery now?”
Accredo rep: “Yes! Let me put you through to scheduling.”
Me: holds for several minutes
Same Accredo rep: “... so it turns out no. They need to do a few more things before it’s ready for scheduling. This call was just to let you know the Medicaid was verified. Another bot will call you when it’s ready for scheduling.”

And that brings us to the present: still waiting. At least we’re back to “no money owed”, but at this point I will not believe that the process is over until I actually have a Revlimid bottle for the correct dosage in my hands.

Getting treatment for cancer is not as bad as having cancer, but it is A LOT. x_x

Lut saw his oncologist for the first time since mid-March. Per the lab work from last visit, the cancer is still in check. His platelet count is still kind of low, so the doctor is thinking that when he restarts treatment, they'll use a different drug that won't suppress Lut's bone marrow as much as the Revlimid does. But -- good news! -- he doesn't see a need to restart treatment yet. Lut gets another month off! I am excited.

Lut has been doing pretty well for the last few weeks. He still sleeps 10-12 hours at night, but he's been staying awake most of the day instead of napping often, and he's done more reading and gaming. On Monday, he cooked dinner for us and yesterday he did the dishes before I got to them. ♥ So things are feeling a lot more normal, and I am delighted at the prospect of EVEN MORE recovery time.

So the news from cancer-land is good for a change, and this is nice.

Lut's body did not produce enough stem cells to collect via the Cytoxan-based mobilization either. This was the last method to try in order to do the bone marrow transplant, so that is not going to happen.

We'll go back to his previous oncologist next week and resume treatment there. He might end up trying to get into a clinical trial somewhere down the line. We'll see.

Thank you for your well-wishes, everyone.

Lut was discharged yesterday!

I forgot to bring a snack or lunch to work yesterday. I can't remember the last time I forgot food. But I was only working until 2:30, so I figured I would get something when I left. I had a couple of mini Twix bars out of a co-worker's candy bowl.

Lut called at 1:45. "I'll be ready to go at 2:45!" So I left work at 2:30 and went straight to the hospital, arriving at Lut's room around 2:55. I packed up the stuff in his room and paged a nurse to get his remaining beverages out of their fridge (this hospital keeps their snack room locked up).

Nurse: "He has one medication to get from the pharmacy. I called them earlier and they said it's ready for pick up. Why don't you pick it up, call us when you've got it, and then we'll bring him down in the wheelchair* to the front entrance while you bring your car around?"

* Lut can walk, but he tires quickly and the hospital is ginormous.

So I shoulder several bags full of stuff and go down to the hospital pharmacy on the ground floor.

Pharmacy: "Lut? We don't have anything ready for Lut. We don't even have anything on order for him. We have some incomplete requests that they never finished?"

I called Trask and asked him to page the nurse, to see if this was something we could only get from the hospital pharmacy or if we could get it filled at our regular pharmacy. Then I walked back to the car, dumped off all Lut's stuff, and walked back up to his room.

Nurse: "Sure, we will give you a paper prescription! You can get it filled anywhere. Just waiting on the doctor to sign it!"

Me: "You can't call it in? Uh, okay."

After another wait, we finally leave the hospital at 3:55. We wade through the beginnings of rush hour traffic, and go to the Wal-Mart pharmacy two miles from our house.

Wal-Mart Pharmacist: "Oh, this is a compound. We don't do compounds here, sorry. Some of the Walgreens do. CVS on Noland Road, maybe?"

So I go to Walgreens on Noland Road, which is across the street from the CVS, figuring I'll ask CVS next.

Me: "Can you fill this?"

Walgreens: *takes script, takes all my insurance info*. "It'll be ready in an hour, hour and half."

I went home, made dinner, ate, talked a little to John when he messaged, and played a game of Small Worlds online with him. By now, it was 7PM and I hadn't yet heard from Walgreens, apart from an automated text asking me to acknowledge that I wanted texts, and then a second text confirming that I did. I called Walgreens. Their automated system had no record of my order. I waited on hold for several minutes to talk to a person. The person also had no record for my order. She went to talk to the pharmacy. I waited on hold for several more minutes.

Walgreens Pharmacy: "Oh, I thought I paged you before you left. We can't fill this. I just put it to one side."

Me: SCREAMING FOREVER.

Me: *drives to pharmacy, still screaming*

I waited several minutes at the useless Walgreens pharmacy to retrieve the piece of paper, and took it across the street to CVS.

CVS pharmacist: *makes many sympathetic noises as I complain vociferously about Walgreens* "We do compounds here, but we usually send them to our overnight pharmacist. I don't know if we have this drug in stock. I will look."

Me: "He's supposed to get this four times a day and the hospital had only given it to him twice when he left."

CVS pharmacist: *ransacks pharmacy looking for drug* "I'm afraid we don't have it. It's pretty obscure; a hospital pharmacy will probably have it but the other ones only would if someone else had recently placed order and they had some of the powder left over me."

Me: *thanks nice CVS pharmacist and tries not to cry*

Me: *calls hospital pharmacy to make sure they can produce this tonight*

Hospital Pharmacist: *checks* "Yup, we can."

Me: "You're open 24 hours?"

Hospital Pharmacist: "Oh, no, we close at 9PM."

Me: "Okay I can get there before nine."

So I spent another 30 minutes getting back to the hospital pharmacy, waited 20 minutes to get drugs, and finally went home so I could dose Lt. About 2 hours apart, because it was so late by the time I got home with drugs.

I guess the moral of this story is:

1) Eat lunch so you are not furious over every problem that arises

2) Never leave the hospital without all the medications you will need that day, whether or not it delays you.

Still. Six trips to four pharmacies over the course of six hours, to get one prescription filled. x_x

Scorecard:

Hospital Pharmacy: C for not having the prescription ready the first time (after telling the nurse it was ready! What the heck, pharmacy?), but at least made up for it by getting it ready the second time

Hospital nurse & doctor who signed prescription: C- Maybe it's not their job, but I feel like one of them should have known I was not gong to be able to get this prescription filled same-day anywhere else.

Wal-Mart Pharmacy: B. OK, he couldn't do it, but he knew that right away and attempted to redirect me to someone who could. And in fairness, if I hadn't needed it filled same-day, the CVS would have been fine

Walgreens: F-- NEVER GOING TO ANY WALGREENS EVER AGAIN STILL SO ANGRY

CVS Pharmacy: A+ pharmacist actually knew what she was talking about and gave useful advice.

All of this aside: Lut is home! \o/ &hearts;

This is a profound relief.

We are back to the 24/7 care routine, with daily visits to the clinic. On Monday, they will once again attempt to collect stem cells. This is scheduled for five days, which is interesting because previous attempts had all said "might take as much as three days". I am not sure if this is because it might actually take five days of collection, or if it's more "if your counts are not high enough to start collection on Monday, we tentatively plan to try again on Tuesday and maybe Wednesday, so here's some extra just-in-case appointments." We're at the clinic now and the doctor is supposed to see us this morning, so I'll ask him about it when I ask about his meds.

The latest attempt at mobilization (the process of getting Lut's body to make enough stem cells in the blood stream that they can collect enough for a transplant) started 13 days ago. It had been going reasonably well, though not great. We are at the point where "if things went great, we would've been able to collect stem cells from you today". Things had not gone great, and his white blood cell count was still at the "too low to be detected" point. Since the chemo (cytoxin), he'd been given fluids once and platelets twice, but hadn't needed hemoglobin yet. He was feeling about as well as he had before the chemo.

Yesterday evening, at 6:30, I went in to talk to him about dinner and he felt hot to me when I touched his forehead. So I took his temperature: 100.4, which is 1/10th of a degree below the "call 911, you are going to the hospital" threshold. I made him dinner and we sat down to watch Blade Runner 2049. An hour later, I took his temperature again: 100.9.

So I called 911 and we waited for the paramedics. They arrived and said "oh hey uh we've both been sick lately so maybe you should just take him to the ER yourself."

I took him to the ER, then called the BMT 24-hour line. I am still confused as to what the exact order of operations is supposed to be with various symptoms. It seems like "just take him to the ER" is the quickest, to be honest. Anyway, the ER saw him pretty quickly and started him on a course of general antibiotics at once, because with immune-suppressed patients they do not fool around. I hung around the ER until 10:30, then went home to get some sleep.

Not very much sleep: about 5.5 hours. Then back to the hospital this morning to see how he's doing. His fever at the hospital had gone down, and some of the readings have been normal, although it had spiked just before I left him this morning. He doesn't have any other symptoms (this is as expected, because when you have no white blood cells they can't cause any of the fighting-off-infections symptoms). They haven't found any signs of infection yet. So possibly it is just an allergen-caused fever, or "fever because that sometimes happens when you have no white blood cells."

There is at least a chance he'll be able to proceed with mobilization despite the hospitalization. I am not sure what happens next if we abort mobilization again. Lut thinks there are more options for collection. I kind of thought there was a point where they go "this isn't going to work, just go back to normal chemo and how for the best." But I don't know if we're there yet.

Anyway, since Lut's in the hospital, I do not need to be at home taking care of him. So I went to work today.

The enforced staycation for the last twelve days was not too bad up until the hospital stay. Daily doctor appointments, sometimes for several hours, but mostly pretty quick. Lut hasn't been able to do much for himself and he can't have restaurant food, so I was doing a lot of cooking and cleaning. But I had a lot of free time too. I finished editing Demon's Lure on Saturday night, so that put me ahead of my writing schedule for the month. I should have gone straight to editing Demon's Sigil, or possibly to working on The Princess, Her Dragon their Prince. Instead I went haring off after the outline for Frost, which is full of problematic material and was originally started in 2015. I'd forgotten all about it until something reminded me of it on Thursday. I doubt I will make this thing my next WIP. But I will let myself noodle at it until the end of the month, because cancer is the worst and my brain deserves some candy.

Next month has to be more editing or work on planned next book, though. Assuming cancer doesn't take another turn into AHHH NUUU land.

Prayers for Lut's recovery appreciated thank you.

I mentioned in Saturday's entry that the next attempt to collect stem cells from Lut would be "three times as bad as the previous attempts."

The schedule for it started today, with seven hours of chemotherapy at the clinic. Then he'd be sent home with another IV hooked up to him, and I'd bring him back Thursday to have that unhooked. Then he'd get shots starting on Sunday morning and every day for the next nine days.

The consent-to-treatment meeting with the doctor was also this morning. I dropped Lut off at the clinic and went to work, with the plan to pick him up after the chemo was done.

Five minutes after work, I got a call from Lut. "You need to be part of the consent meeting," he said.

Then the doctor came on the line: "What are you doing at work? He's going to need 24/7 care after having the chemo, today for three to four weeks."
Me: "What?"
Doctor: "This is the same kind of chemotherapy that we use before the transplant. It's a weaker form; if the transplant uses a 10, this is a 6 or 7. But he'll still need 24/7 care! You can't be leaving him alone to go to work!"
Me: "... literally no one mentioned anything about this to me."
Doctor: *lectures me some more about how I can't leave Lut alone and what am I thinking and if I'm going to got TO WORK they can't do this treatment*
Me: "I need to talk my boss. I will call you back."
Doctor: "All right, well, we'll cancel the treatment for today -- "
Me: "LOOK I WILL CALL YOU RIGHT BACK GIVE ME FIFTEEN MINUTES."
Doctor: "All right."

Not only had no one told me that Lut was going to need 24/7 care, but the nurse-coordinator had specifically consulted me about what times would be most convenient for me WITH MY WORK SCHEDULE. So I am pretty sure the doctor was the only one who knew what was involved and had not successfully communicated it to anyone else. x_x

So I called my boss and didn't reach her, emailed her, called again, got her, and poured out my tale of woe. "So I need to take 3-4 weeks off STARTING THIS AFTERNOON, and then another two weeks sometime afterwards if all goes WELL."
Boss: "Omigosh TODAY?"
Me: "YES. They JUST TOLD ME."
Boss: "Well, okay, you better do that then. Let me know what you've got going on and we'll get it covered."

So my boss is basically a saint. ♥

I called the clinic back and they started the treatment. Which I didn't need to be there for, so I'm not sure why the doctor was so put out that I wasn't, but whatever. If he gets Lut's cancer into remission I can forgive the lousy communication.

Our manager called shortly after I got off the phone with my boss, to give me moral support and let me know that she was also 100% supportive about me needing the time off.

Then I spent the next six hours at work frantically trying to wrap up the things that were important, and that I was in the middle of, and where I have some advantage over the rest of my team in experience/know-how.

I actually did pretty well at this! I was pleased. I wrapped up the last report just when the nurse called to say that Lut would be ready for pick-up soon. I dashed off some emails and turned my out-of-office on and then went to collect Lut and a pile of new medications and instructions.

As of this afternoon, I am on leave from work, which is a weird feeling. I still have to get up early every day and take Lut to the clinic, but those appointments are short. I can't go to the coffee shop to write, though, because the reason I am off work is so I can be here for Lut. I may try to make Pretend Coffee Shop in my living room, where I go there to write on my laptop and have a Coke float. Otherwise, I'm afraid it'll be video games at my desktop whenever I'm not actively checking on Lut. I am not required to hover over him, vulture-like. It is assumed that the caregiver will sleep at the same time the patient does, for example. So I expect to be keeping an eye on him, but also that I'll have a lot of time when I can do whatever I want except for leave the house. Lut is under orders not to leave the house except to go to the clinic, too. His immune system is compromised by the chemo. He can't even have food from a restaurant! Very sad. :(

Lut is doing okay-ish so far. This chemo is much more like what you think about when you hear "chemo", so he has nausea and weird pains and he will lose his hair in the next week or so. It's not too bad yet, but the worst hits in the next day or two.

The odds of a successful transplant at this stage are not super-great. If they can't collect stem cells from him even with this, then he will go back to his previous oncologist and we'll manage it with less dramatic kinds of chemo and hope for the best. It's not an instant death sentence by any means, but the chemo-alone route is unlikely to get Lut into remission. Prayers and good thoughts are much appreciated.

One of the things about cancer treatment is that you make plans, and then things happen and then you probably throw out that plan and try something different. And all of this is both expensive and unavoidable. Not necessarily expensive to the patient personally, because healthcare costs are beyond bizarre and well into surreal in this country. But expensive for someone.

Back in December, the plan was that the doctors would collect stem cells from him in the middle of the month, and then he'd get a megadose of chemotherapy at the end of the month.

Then he got pneumonia after the first two days of shots before collection, so the whole thing was aborted for two weeks. At the start of January, a pulmonary specialist saw him and said his lungs still showed possible signs of infection. You cannot give someone who has even a trace of infection a megadose of chemotherapy to kill everything in their bone marrow. Because that annihilates their immune system. Any infection would take over immediately.

So they couldn't start doing the transplant any time soon. However, they still wanted to do the collection now, because the more chemo you get the weaker your stem cells are, so this is a sooner-the-better situation on collecting stem cells.

Next plan was to collect stem cells in early January, put Lut back on normal chemo until the infection was provably completely gone, and then do the transplant in early February or so.

So in early January, while Lut had the out-patient surgery to place the trifusion line, I called the speciality pharmacy about getting him back on Revlimid.

I guess I never really wrote about Revlimid. Revlimid is a crazy-expensive chemotherapy drug specifically for treating multiple myeloma. The retail cost is around, I dunno, $800 per a pill. You take one pill a day, two weeks on and one week off. My insurance has a $12,800 out-of-pocket cap. (There are like three different levels of caps: $3200 deductible, $6700 treatment, $12,800 out-of-pocket. Lut has cancer. He hit them all last year. He will hit them all this year too). With most kinds of medical costs, you get the treatment whether you can pay for it or not. But pharmacies aren't going to send you $11,0000 in drugs without payment up front, from you or your insurance provider or someone. Fortunately, there's a grant program, Celgene, that will cover the out-of-pocket for Revlimid if your annual income is less than $100k.

But all this makes ordering Revlimid complicated and weird. I started the call before Lut went into surgery and I was still on it when he came out. Eventually, I finished, and arranged to have the Revlimid delivered to a convenient local branch of the pharmacy instead of to my house like usual (they do not stock $800-a-pill esoteric drugs at local pharmacies in general), because we were going to be out of the house.

The next day, Wednesday, we went to the apheresis center and they checked to see if Lut had produced enough stems cells to collect. He hadn't. He got more shots that night, including a different drug, and then we went back Thursday. Still no luck.

Nurse-coordinator: "Okay, we're going to abort this try. Do not start the Revlimid!"
Me: "Uh, should I pick up the Revlimid? Because it was supposed to arrive at the pharmacy this morning."
NC: "No, don't."

When I got home, Lut told me the pharmacy had called and said we could not pick it up. "They said it has to be sent to the house, it can't be sent to the pharmacy."

Me: "Well ... that's very weird. Maybe they got the memo that it was cancelled? We didn't want it anyway so ... good?"

Fast-forward two weeks, to Friday morning. Lut has tried and failed stem cell collection a third time. We get to try a fourth time next week, using a regimen three times as bad as the previous attempts. He is still not back on regular chemo to manage his cancer because they're still trying to collect.

I get a call from the Sarah Cannon Cancer Center, the place that prescribed the Revlimid. "CVS Pharmacy called and said your Revlimid is still ready for pickup."

Me: "... they told Lut we couldn't have it?"

SCCC: "... I got nothin'. They say now that it's been there for two weeks and they're going to send it back and destroy it if you don't pick it up. You might as well pick it up, Celgene and your insurer already paid for it regardless."

Me: "Well. Okay then."

And this is why I have $11,000 in cancer drugs that Lut isn't currently taking on my kitchen counter. We kind of expect he will be back on Revlimid at some point, although at this stage probably not in the next several months. Still, it keeps for a year and doesn't have any unusual storage requirements. So hopefully it'll be fine when he needs it. And it will save me from dealing with Revlimid bureaucracy for three weeks when the doctors put him back on it. I would rather the pharmacy had been able to just ship it to some other customer who needed it, but apparently once it's shipped anywhere it can only be given to the original patient it was prescribed for. Medicine has weird regulations, y'all. I don't even know who made that rule.

So we have begun the next Medical Adventure. It is not arduous by comparison with, say, Frodo's journey to Mount Doom.

I am not cut out for the journey from the Shire to Moria, much less Mount Doom.

Anyway, the next treatment step is a bone marrow transplant (henceforth BMT). I don't think I explained this here before, but it's actually pretty nifty. They harvest healthy stem cells from Lut's body, and freeze them. Then they hit him with massive chemotherapy that kills everything in his bone marrow, cancer and healthy cells alike. Then they transplant the harvested stem cells back into him. So since it's his own stem cells, there's no worry about rejection or other long-term complications.

But before they can do this, there are Many Appointments. Many many appointments. So many appointments.

Two weeks ago, they told me they would schedule these appointments for Monday and Tuesday of this week. Last Monday (11/27), I emailed the coordinator to ask if anything had been scheduled yet. She emailed me and the scheduler back and told me (a) they needed to wait for the physical therapy doctor to evaluate him on 11/28 and (b) they had several people ahead of him so they would let me know when they had anything.

On Wednesday (11/29), I still hadn't heard. I emailed them again.

I did not hear back.

I checked Lut's phone for messages. There were none. They did not try to call my phone either. At 6:15 on Friday, I got a voice mail that said "someone in your family has an appointment at [address] on Tuesday 12/5 at 1:15PM."

Well. Okay then, I guess this is taking longer than they expected.

We go to his original oncology doctor on Monday as scheduled. Oncologist: "Since you haven't gotten the BMT stuff scheduled yet, let's keep on with your treatment here." I called the number from the voice mail back to verify that this was connected with the BMT process (it was) and find out what it was. I scheduled the next shipment of Revlimid, Lut's current oral chemo drug.

Then I went to work on Tuesday morning with the plan of leaving early to take him to the afternoon appointment.

At 11AM on Tuesday, Lut got a phone call: "We noticed you didn't make any of your appointments this morning! Is there a problem?"

...

They called me, and it turned out they sent us the schedule by UPS. UPS dropped it by the door we don't use. The scheduler thought she had emailed it, or maybe she thought the coordinator had emailed it and the coordinator thought the scheduler had emailed it but in fact no one had. Scheduler: "The ones you missed are all with us so they're easy to reschedule. I will email you the appointments you haven't missed yet and then a list of the rescheduled ones."

Me: *vibrating with stress*

Fifteen minutes later, I got a schedule. It had SO MANY APPOINTMENTS. One Tuesday afternoon. Five on Wednesday morning. One on Thursday afternoon. Five on Tuesday 12/12. One each on December 16-21.

I emailed my boss to explain the SCHEDULING EXPLOSION and when I'd be out for what.

Fifteen minutes after that, I got another email: "Here are the rescheduled ones!" There were four more appointments on Thursday morning.

Me: WHAT THERE ARE MORE?!?

I am basically out of paid time off, but my boss has said I can take unpaid time off THANK GOODNESS. But I am also vibrating with financial stress so I don't want to miss paychecks if possible. So I planned to come to work when possible. Thursday is shot so full of appointments that I'm taking it off. I only missed an hour on Tuesday, because the afternoon appointment was quick enough that I could come back to work afterwards. Wednesday I planned to go to work in the afternoon.

The scheduling snafu didn't make anything significantly worse as far as missing time at work. It basically just transferred all the Tuesday morning appointments to Thursday and he had an afternoon appointment on both days anyway.

Tuesday night, I checked to see how long the trip would take to the med center for his 7AM Wednesday appointment. Google said 17 minutes. At 6-7AM, I did not expect traffic to be significantly worse (rush hour in my city is not serious), so I planned to leave at 6:30 to allow for traffic and time navigating the med center. I memorized the directions because Google Maps has been "upgraded" to the point that it now barely runs on my 2010-model phone. (Six years ago, this same phone ran Google Maps just fine. The problem with tech obsolescence nowadays is that the software changes. So even if you just want to do the same things you did several years ago, YOU CANNOT.)

On Wednesday morning as we were leaving, I tried to get the directions up on my phone anyway as backup. Ten minutes into the trip, we hit a major slowdown on the highway. An accident had closed two lanes and traffic was at a near-standstill for miles leading up to it I finished getting directions up on Google on my phone, and the highway route was now 20 minutes slower than taking surface streets. I fought my way across two lanes of traffic to the nearest exit. My phone managed to give me accurate directions for the first 15 minutes after that, but half a mile away it started doing the "I will tell you what to do two minutes after you've missed the turn" thing. x_x

We finally limped up to the medical center at 7:15, and I let Lut out at what I hoped was the right building and went to park.

Miraculously, we had indeed gotten to the right building (it's a giant complex of like eight) and the entrance was even near his appointment location.

The rest of the morning went unnaturally smoothly. The first appointment saw him ten minutes after we got in and was done with him by 8AM. Our next appointment wasn't until 9AM, but we walked over there anyway to wait. They saw us right away and were done with us by 9AM. Next he had three different kinds of x-rays, which were scheduled to take 90 minutes, first starting at 10:00 and last starting at 11:00. But radiology is walk-ins so they just take you as you show up. They took him within fifteen minutes and were done with him by 10AM. It took a little while to escape the medical center and get back to the car, but I got Lut home, picked up my lunch from the house, refueled the car, and got to work at 10:45. So I'll only be short 90 minutes or so today, too, instead of half a day.

We'll see how well tomorrow goes. He doesn't have any walk-in places tomorrow, so pretty sure that will be more like the normal medical experience. At least we don't have to get there until 10AM. Traffic will be about as bad but no getting up at 5:30AM for it. x_x And Lut has lab work so I don't need to make breakfast. I will probably just have cereal myself, instead of making something hot.

Current Mood: stressed

Lut is still at the hospital. He's in a regular room now, and he's off the IV and the monitoring equipment, which is nice (no more wires to worry about every time he moves). He's been eating on his own. He gets up a couple of times a day, with assistance, and sits in the hospital room recliner or stands by the window for a little bit. Other than that, he mostly sleeps or tries to sleep. His back hasn't been hurting as much and he hasn't been needing a lot of pain meds, which is good.

His mood is good under the circumstances. He knows where he is and he's polite, patient, and appreciative. Conversations with him don't work very well. I can't tell if he's having delusions or just trying to tell me about a dream or a game he used to play or something. Physically, he's better than when I took him to the ER 3 weeks ago, but I don't think the hospital is really helping his mental state. And he's not reading or playing with a computer or any of his normal activities, because he's too tired even for things he can do while lying in bad. At most, he'll watch a show, and he doesn't have attention for even that most days.

Case management at the hospital is trying to place him at a skilled nursing facility. He is to get rehab there and then he'll be able to come home when he's better able to take care of himself. Placement at a skilled nursing facility is hard, because of some combination of insurance, Lut's particular needs, available space at facilities, and probably some other things I'm not thinking of.

I have some lists of good car models for my needs and the probable prices for them. I have not gone shopping for one yet. I should probably do that this week. I kind of have the feeling I will go with the first dealership that has a reasonable car on the lot and doesn't seem like total scum. I do not have high expectations.

Lut's siblings came in last weekend, all four of them. I suspect I appreciated this more than Lut did. Bone marrow cancer causes a lot of fatigue: it's not just "he's in pain so he doesn't sleep well so he's always tired", as I thought before I brought him to the hospital. He just doesn't have a lot of energy. Maybe five or six spoons total for the day. Interacting with someone for a few minutes takes a spoon. It's hard.

On Saturday, I asked them to look at skilled nursing facilities for me. They ran all over the city, looking at the ones on the printout the hospital had provided. They were kind of horrified by most of them. They got to the last one on the list too late for a tour, and they told me I should look at it because it looked nice based on its website.

I went to that one and it looked good in person too: clean, well-lit, cheerful, good facilities. I went to the one his siblings liked the best of the ones they saw, and thought it was pretty good too. It was a hard choice for me, because the facility the siblings hadn't toured was a newer, nicer building with better grounds, but the rooms were smaller and most of them were "semi-private": they'd share a bathroom and a little foyer-hall with an adjacent room, and only a curtain separated them from the little foyer. It wasn't as a bad a shared room: there was a real wall between the two rooms. But a curtain is not nearly as good as a door when it comes to blocking sound. The more run-down facility had larger rooms and they were all private.

I tried to consult Lut on it on Monday, but he was too exhausted to give an opinion and the hospital wanted one in the next few hours. So I picked the nicer facility. I can hope he'll luck into a private room? I don't know how this will work with insurance. They are crazy expensive without.

At the hospital, they moved him from the ICU back to the regular ward last night. He doesn't seem to me like he's ready to be discharged to anywhere, but he's off the IV and they've detached all of the other wires they've had him hooked up to. They didn't even have him on a heart monitor when I saw him this morning. The case manager in the ICU thought he might be discharged this week. I don't know how long he'll be at the skilled nursing facility, except that it is short-term care, not long-term. The idea is that he gets rehab there, and then he can come home.

He doesn't seem to be in as much pain now, but he is exhausted every time I see him. Even when we get him sitting upright in a chair, he dozes off in a matter of minutes. If the chemotherapy works, he'll regain some energy, but I don't think rehab on its own is going to get him any more spoons.

I don't know what to say. People keep asking me how he's doing and it is exhausting to try to answer. Badly, but stable? He's better than last week but not better than when I took him to the ER. The oncologist is optimistic about the chemotherapy. He gets his second treatment today.

Prayers and well-wishes still appreciated. Thank you all for the car advice, too. *hugs*