I Told You So

It's Saturday, and I'm not feeling that bad anymore. My stomach has settled a great deal, and the pain for my line has dropped at least in half (to a level 3 now).

So why was last night so hard for me?

I'm not sure why I couldn't just let the promises for this process sustain me without having a mini-meltdown, but I feel much better this morning.

Time for another dose of Fludarabine and Cytoxan, so off to LDS Hospital Dale and I go.

We're a bit late (10 minutes), but they're still not prepared for me, especially when I demand that we change anti-nausea drugs. (What about the dexamethasone I was promised?) And we neglected to give extra fluids (saline) with the Cytoxan that was mentioned on Wednesday. Can we fix both of those things?

Sure, but it takes a while to track down the new orders.

Finally, the dexamethasone is on board, the two chemo drugs finish, and we clear the building around noon.

For the next three days, I'll just get the Fludarabine, which isn't as potent, so I should be good to go.

And no nausea or vomiting yet. And very little pain, especially compared to last night.

Hip, hip, hooray!

Pulmonary Embolism Scare

It's funny. I did change my medications. The nausea is much better, and the burning in my stomach is down to a level that I can function again. I'm feeling a little better and it's been only 1.5 days since the changes. Surely, I'm going to feel even better after another day or two.

In fact, I feel so much better that I'm back at work.

Then I get a call from Kathy. She's just checking on me to see how I'm doing. When I tell her I'm feeling better--enough so that I can function without tears again, I expect her to end the call. But she doesn't.

Apparently, Dr. Wendy is now concerned that I feel so terrible. She knows that I had pulmonary embolisms in the past from the chemo or the port or some combination of the two, and she wants to ensure that I don't have any again.

Can I be to the Central Utah Clinic imaging department in American Fork in twenty minutes? No, I'm at work in downtown Salt Lake. Okay, can I get there before they close--around 4:15? Yes, that I can do if Dale can leave work 30 minutes early.

Giggling, Kathy warns me not eat or drink anything in the next 45 minutes as I'm racing off to the scan. It's supposed to be fasting scan. Oh well.

We make it to the clinic on time, have the CT scan, and are told that we can wait in the office for the results or go home and Dr. Wendy's office will call with the results. I know what that means. It's code for the technicians didn't see anything alarming, so they'll let me leave while the radiologist reviews it. It's a pretty good sign, so we opt to leave.

When we haven't heard anything from Dr. Wendy's office by 5:30, I pick up the phone to call. It rings in my hand. It's Kathy. No PEs. No real explanation for why I feel so tired, but just take care of myself and be alert for any changes.

Okay. Check and check!

Feeling Like Crud!

I'm so tired. I'm in so much pain. My stomach has a fire burning across it almost constantly. I don't ever remember feeling like this from chemo--especially from a chemo that's supposed to be kinder and gentler.

Okay, I give up. I won't ignore all of this crud any longer. I've got to find out what's causing it and how to fix it.

* Nausea? The promethazine and zofran (ondansestron) combination really isn't working. It just knocks me out, so surely we can try something else. Check, I have a plan of attack.

* Low energy? Maybe my blood counts are really, really low and that's why I'm so lethargic. Fine. We can test that from a quick blood draw from my port. Check.

* Bone pain? Oh yes. There's some secret combination of drugs that's supposed to help that, but I can't remember what it is. I know who to ask though. Check.

* Stomach pain? Think Trish. What's causing my gut to be on fire? Hmmmm. Wonder if there's anything I can do for bowel trouble? Check.

Those are the biggies. Now I have an action plan for each of them, so I go hobbling into Dr. Wendy's office and ask to speak to Kathy. After talking with her through each item, I've convinced them to check my blood cell counts, order a different antiemetic, reveal the combination of one Claritin and one Aleve every 12 hours for bone pain (who would ever guess that it's that combination that helps bone pain the most?), and recommend four different things to try for tummy troubles.

I'm feeling better just knowing that we're going to try some different things and that I don't have to live with all of this bothersomeness anymore.

After about 10 minutes of waiting for the results of the blood counts, I'm not so sure. They're great--even just a bit high (but not concerningly so).

Now what? I guess it's time to go home, change to the new medications, and see what life has next on its agenda.

Peripheral Neuropathy and Nausea

Silly me! I guess I was hoping for no side effects because Adcetris is kinder and more gentle than other chemo drugs. Ha! It is still chemo, Trish. Time to pull your head out of the sand and face facts.

So that stomach rumbling, growling, and intermittent nausea isn't from the antibiotic that I've been on but finished Sunday? Nope. I figure that out just yesterday about mid-afternoon.

That terrible metallic taste in my mouth that I've been trying to ignore? Yea, that's chemo too.

And the strange sensations, almost like small electrical charges, in my fingers? Ka-ching! Welcome to the wonderland of chemo again.

I haven't been taking my anti-nausea drugs. (I didn't want to need them this time, so I've just been dealing with it.) But I start taking ondansetron (Zofran) every six hours. That one is no problem to take, but it's not working by itself. Crud!

Now I have to start adding promethazine (Phenergan) in the schedule. And it knocks me out too. By 7 p.m., I'm ready to sleep through the night.

Apparently, our neighbors had a huge kitchen fire just a few feet away from where I'm napping on the couch. At least four big fire engines came, sirens blaring; but I didn't hear anything.

I hate not having the full use of my brain. I don't want to sleep away what's left of my life. I've got to figure out something else that will work. Crud!

The Chemo Plan and First Dose

So here's the plan for using Adcetris (brentuximab vedotin):

* Starting today, every three weeks, for a maximum of 16 doses (16x3=48 weeks, almost a year. I hope we don't go that long) until the maximum effect is reached (Hodgkins is gone or reaches a plateau and is no longer reducing.)

* We'll start the infusion with Benadryl. Even though the literature doesn't call for it, Dr. Wendy wants to ensure that I don't have some sort of allergic reaction to the drug. (Uh oh. That stuff knocks me out--hard!)

* We'll also infuse Zofran (an anti-nausea medication).

* We'll repeat CT scans every 2 doses to measure any progress.

* It should be a kinder and more gentle chemo than I've ever had before because it's specifically targeting Hodgkins cells. Of course, there will be some collateral damage along the way.

It's all pretty standard information to me. When Kathy comes to walk through what to expect and answer any questions, she has a copy of the Adcetris patient pamphlet (which I've already read on the Web). She doesn't have any other information for me because it's so new and no one in Utah County that she knows of has ever used it.

The Benadryl takes about an hour to infuse; the Zofran takes another 30 minutes. Finally we're ready for the good stuff (or is that bad stuff). The Adcetris takes another 30 minutes.

Dale and I are playing cribbage (our standard chemo activity), but that darn Benadryl is really messing with my head. I can't concentrate anymore. All I want to do is sleep.

Even though we came to Dr. Wendy's at 9:30 this morning and the chemo takes only 30 minutes to infuse, we don't leave her office until almost 2 p.m. Whew! I guess times really flies when you're having fun. (I need to redefine what having fun is in my life!)

When we get home, Dale's trying to plan meals for the weekend. However, while trying to answer one question, I've fallen asleep--sometimes in the middle of a word--about 10 times. He gives up and lets me sleep.

Darn that Benadryl! I want to see if we can try the chemo without it next time. How am I supposed to work from home if I can't stay awake?

So next chemo appointment is Wednesday, September 12 at 9:40 a.m. One day--or dose--at a time.