Purple Everywhere

Purple Everywhere
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Tuesday, September 18, 2012

Second Chemo Dose

That Neupogen worked! I guess all of those early morning drives to get injected were worth it.

I'm actually given the second chemo dose on Tuesday, September 18, after a quick blood draw indicated my cell levels were high enough.

I've realized that the only thing worse than getting chemo is needing it but not being able to get it because of low blood counts.

This time, they can give me one Neulasta shot if I come back tomorrow. Neulasta is like Neupogen; it's just the long-lasting type of growth cell stimulating factor (GCSF).

Because I have enough time scheduled between doses (at least 15 days), I qualify for Neulasta and not every day shots of Neupogen. I guess the insurance companies have really balked at paying for these drugs. Neulasta is easily over $1,000 per shot. The manufacturer claim it works best if given 24 hours after chemo and at least 15 days before chemo, so that narrow window cuts down on the amount of people that can get it.

Lucky me. No more early morning drives for a shot!

Wednesday, September 12, 2012

Too Low to Get Treatment

It's Wednesday, September 12th and it's time for my second treatment. Dale has to work, so I solicit Jennifer's assistance in going with me. She doesn't know how to play cribbage and has heard that's how Dale and I pass the time while the nasty drugs are seeping into my veins, so she agrees to accompany me.

Dr. Wendy's office draws some blood, and we talk with Dr. Wendy for just a bit about some of the weird side affects. Alopecia or hair loss isn't mentioned in the Adcetris patient booklet, but I'm assuming it's something like a conditioned response with my body. "Oh, this is chemo. Body, you know what to do. Shed all hair."

Then, Jennifer and I go join the circle of trust for my treatment. We set up the cribbage board and wait, and wait, and wait. I'm trying to teach Jennifer all of the intricacies of cribbage, so I'm not that conscious of how much time is slipping away.

(My sisters say that cribbage rules seem to say "Well, if it's the second Tuesday of the month and your name starts with the letter 'L,' give yourself two points." Hilarious!)

After about 30-45 minutes, one of the nurses approaches us. "Trish, your blood cell counts are so low that we can't treat you today. Instead, you need to get a shot of Neupogen every day for the next five days."

So, when I'm feeling absolutely miserable and have my blood drawn, my levels are great. But, when I feel good and am ready for another treatment, my levels are dangerously low. Weird!

They can't use Neulasta, which is the longer-lasting shot that stimulates my bone marrow to produce more cells because there's not the 15 days before my next treatment window that it needs.

I get one shot that day. Then, at 8:30 on Thursday morning, I get to drive down again to get another shot.

The American Fork office happens to be closed this Friday, so Friday, Saturday, and Sunday, I get to drive down to the Central Utah Clinic in Provo (directly west of UVRMC) every morning at 8:00 to get a shot. Yes, even on Sunday! Whew!

They're serious about that 8:00 a.m. time, I learn on Friday when I arrive at 8:12 a.m. instead. I have to wait about 30 minutes before they can finally give me the five-second shot. But I hear while I'm waiting that there were about 15 patients there that morning for their shots--most of them already in line by 7:55.

Note to self: be there early the next two days so I can be out of there earlier.

By Saturday, they don't have us meet them in the office. Instead, the nurses have formed an assembly line in the north lobby, where they have a list of names and a container of different medicines. You step up, announce your name and birthdate, they sort through the container to find your medicine, and give it to you. I was in the lobby for about 1.5 minutes on Sunday--total--because I was the first in line.

Saturday, September 1, 2012

Portable Oxygen Nightmares

After fighting with the ER staff for five hours, I just want to go home, get my O2 concentrator set up, and collapse into bed. Nope. Not going to be that easy.

There's no one waiting for us at our house when we get there. Dale's absolutely exhausted, so I send him to bed while I wait. And wait. And wait.

When I've waited about an hour, I call the phone number that the hospital gave me for Alpine Home Medical. I reach their answering service but tell them I'm waiting for a delivery, so they connect me directly to him.

He's in Riverton, heading to our house; but it will take another 30-45 minutes to arrive.

Aaaarrrrrggggghhhh! Really? It's 4:00 a.m. I was told you'd be waiting for us? There's nothing I can do now but sit and wait some more.

He arrives in about 35 minutes as promised and quickly unloads the concentrator and sets it up. Where's the connection piece that I need for my BiPAP machine? Oh, he wasn't told I needed one (even though I was there in the hospital listening to them give the orders for it), so he'll have to bring one in the morning. That doesn't really help me tonight, but at least I'll get the oxygen I need.

After learning that I got rid of supplemental oxygen about six months ago (it was only that brief of a break I got from it? Darn!), he hurries through all of the paperwork. Do I need portable oxygen? No, I just need it at night, so the concentrator will work great.

He's pretty efficient and gone about 15 minutes later.

Whew! Time for bed!!!!

The next morning, a different driver for Alpine Home Medical brings by a connection piece that I need. Yay! We're in business. Or are we?

Late morning or early afternoon, I realize that I'm struggling to breathe even while sitting quietly at home. Crud! Not only do I need supplemental oxygen while I sleep, it looks like I'm going to need portable oxygen so that I can have it 24/7 as I go to work and church and run errands.

I call Alpine Home Medical's answering service again and tell them I need to speak with their delivery person. It's the same person that delivered the concentrator early this morning, but now he's decided that he doesn't want to do his job. At least, that's my only explanation for what ensues.

After a LOT of going back and forth between me and this man, a couple things are evident. 1) calling to arrange the delivery of portable oxygen isn't going to be the easy thing I thought it would be and 2) this guy doesn't want to come to my house today under any circumstances.

First I'm told that he can't just deliver oxygen tanks. They have to be on the order they received from the hospital. Luckily, I had called the ER department before I spoke with him; and Luke assured me that the order would cover portable oxygen as well. Not true, according to Mr. I-don't-want-to-work-on-a-Saturday.

So I have to give the delivery guy Luke's phone number so that Alpine can get the order they need. Whew! That's squared away. Then, I get another call from Alpine. He won't deliver portable oxygen tanks on a Saturday. Period. That's their company policy. Why the heck didn't you tell me that before we wasted all that time getting the order then?

If I knew I needed portable oxygen, why didn't I mention that earlier this morning when he delivered the concentrator? I didn't know that I needed it then, but I know it now. They delivered the concentrator on Saturday. Why can't they deliver portable O2 tanks on a Saturday? He tells me, "Because it's not an emergency."

Well, it is critical to me. I'm supposed to play a musical number and play the organ in Sacrament Meeting tomorrow and teach a Relief Society lesson. That's pretty hard to do when you feel like you're going to pass out because you're not getting enough oxygen. Plus, I need to go to work on Monday. How am I going to do all of that without portable oxygen tanks?

Finally, he acquiesces and agrees to bring the O2 tanks much later that evening. I don't care what time they arrive, as long as I have them for Sunday, so I'm good.

Then, I make the mistake of asking him to bring a conserving regulator for the tanks. It's a device that doesn't permit oxygen to escape from the tanks constantly but releases oxygen only when you inhale. That way, each tank lasts longer and I don't have to haul as many tanks to work.

Now the real trouble starts. He informs me "There's no way that you're getting a regulator today. Just give up on that idea. Even when I bring your tanks, I'm not going to bring you a regulator."

What's the problem? I've had oxygen before. I've never had to ask for the conserving device. In fact, the delivery people offered it to me. What in the world? Where is this attitude coming from? I'm the customer. You're in a very customer-oriented field, but you're giving me this crap?

Apparently, I need a specific order for the conserving regulator. "Okay. You've obviously talked to Luke and he got you the order you needed before. Can you call him again and ask him to add a regulator to the order? Do you really need me to play go-between for you? What's the problem? I can tell that you don't want to do your job on a Saturday. I understand that. I wouldn't be necessarily thrilled with the idea either, but it's your job! You're on call. It's up to you to be pleasant. It wasn't my choice that my lungs decided to give out on a Saturday. I'm so sorry for the inconvenience that you're having to go through. What about my inconvenience as the customer who's dealing with cancer for the fourth freaking time, chemo for the fifth time, lungs that are failing from the first time, and a whole slew of other affects? What about me? What about the person you're serving that you're supposed to be making life easier for?"

"Well, things have changed with the state and local laws in the past six months," I'm brusquely informed. "You can't just snap your fingers, write a list of things you want, and expect that I'll jump and deliver them."

He reluctantly agrees to call Luke to add a regulator to the order. However, he won't bring me one today. Instead, I have to wait for a respiratory therapist to come to my house and validate the settings on it before they'll give me one. "And they work only on weekdays. There's no way you're getting one today" is his parting, triumphant revelation.

Really? That's how you want to treat your customers? I've had it. I get on the phone with two other home medical companies. Even though they are both usually closed on Saturdays, they are happy to deliver portable oxygen tanks and a conserving regulator if they can get a copy of the order from Luke. And, they're both willing to call Luke and get that order faxed to them.

After figuring out which company is accepted by our insurance, I call Luke to thank him for all of his patience with taking phone calls today and helping me get the order I needed. When I mention that I'm going to switch companies, he's not surprised. "In fact, that guy from Alpine was complaining to me over the phone about you."

What? He told Luke that he'd already been to my house three times today. That I was the most demanding person he'd ever met, and that I would never be happy with their service.

Really? I just want some portable oxygen tanks and a conserving regulator. That's not hard, demanding, or difficult. His first statement is a blatant lie and his second statement, also a lie, should never be shared by professionals about their customers.

My experience with Petersen Medical, in Orem, could not be more different. Zach was happy to come and make a delivery, even staying a little extra time to make sure everything was set up the way I wanted it in our spare bedroom.

Thank you, for people that want to do their job, that make working with them easier when you're in a critical state and need them!

Alpine's main office manager got a terse, but truthful accounting from me on Monday about why I would no longer be using their services and why I needed them to come pick up their equipment.

ER Visit and Supplemental Oxygen

It's late, late Friday evening. Why do abrupt changes in my medical status always seem to occur on Friday evenings--just after Urgent Care has closed and the only place for some help is the local ER? I hate the ER. If you're dying--absolutely cannot breathe, having a heart attack, bleeding to death, been shot, etc.--the ER is the place to head. If it's anything else, they're just going to bother you by running every test known to the medical staff so they rule out anything egregious and cover themselves and the hospital from any future claims of negligence.

Anyway, it's late. I've fallen asleep and wake up. Suddenly I notice (or finally pay attention to the fact) that I'm having a lot of trouble breathing. Crud! I'm pretty sure I know what this means. There were no PEs in my lungs, so I probably need supplemental oxygen at night. But the only way I can get it now is by visiting the ER. I definitely don't want to try and sleep without oxygen because O2 levels naturally go down a little as I sleep.

Sorry, Dale. It looks like we get to visit an ER yet again. We head out of the door about 11:30 p.m.

Unfortunately, our insurance changed and now we have to visit Timpanogos Regional Hospital, instead of the American Fork Hospital ER, which is just 1.7 miles from our house. The AF staff is kind of used to seeing me and really listen to what I tell them. When I had the PEs before, I marched into the triage area and said, "I'm having trouble breathing. I just came from my primary care physician's office, where my O2 was in the low 70s, and my blood pressure and heart rate are elevated. I need you to rule out: 1) sepsis or some kind of gross infection throughout my whole body 2) low red blood cell counts that need an infusion 3) pneumonia and 4) pulmonary embolisms." They listened, ran just the tests they needed to for those four conditions, and found the PEs.

Not Timp!

Why can't they just listen to me? After all of this time and all of these treatments and their side effects, they think they know my body better than I do? Ha!

I walked in and told them that I was having trouble breathing, and that I needed supplemental oxygen. I'd had blood work drawn on Wednesday that was all good and a PE scan on Thursday that was negative. I just need supplemental oxygen.

Nope. They get to run their standard battery of tests: chest x-ray, blood work, and more blood work. Each time a test is run, we have to wait 30 minutes to an hour to get the results. They don't even trust the blood count results from Wednesday. What's a girl to do? So far, everything has been normal and not actionable.

So next we get to try a breathing treatment. They don't work. They never work. They just make me feel jittery. I tell that to the poor respiratory therapist who comes to administer the treatment. She listens and offers to go fight it out with the ER doctor. After all, whose insurance company wants to pay for something that I don't want or need? After another 30 minutes of waiting, the ER doctor is back, ready to argue for his point of view. You know what? The area around my chest does feel tighter and more constricted than usual. Fine. I'll let you try the breathing treatment--not to help my lungs but to, hopefully, loosen the constriction and resulting sharp stabbing pains around my entire thoracic cavity. 30 minutes later: one breathing treatment administered, bodily shaking occuring, and the stabbing pains in my chest are lessened by maybe one tiny degree. Are we finally finished?

Another 30 minutes goes by, and it's time for one last chat with the doctor. They could do one more thing (which now I cannot remember), but I know it's going to be useless. I know, and now I know that they know, what I've been saying all night and early morning. My body needs supplemental oxygen. Please! Can we just get a tank and go now? Off the oxygen, my O2 readings drop down to about 73. On oxygen, only about one liter, it jumps right back up to the low 90s. Please!

There's some more delay as they figure out what medical supply company my insurance prefers. They're recommending Alpine Home Medical, but they're having a hard time locating an oxygen tank from Alpine. Finally, someone on another floor finds one tank that isn't labeled. They give it to me (after about 5.5 hours of waiting) with the promise that someone from Alpine will be at our house waiting for us to arrive so that they can deliver a concentrator.

We're finally back home about 4:00 a.m. Luckily, today is Saturday and we get to sleep in just a bit. I'm exhausted!