Tag Archives: human suit

Had my pre-chemo doctor’s appointment yesterday morning and while at the pre-appointment bloodwork lab, discovered that I was scheduled for a procedure that afternoon which wasn’t on either my or Matthew’s calendar. The lab check-in people didn’t have the access to determine what the procedure was so we had to wait until we saw my doctor to find out it was for my first lumbar puncture chemo infusion.

The doctor was ready to postpone it, as he could tell I wasn’t mentally prepared for it–I’d been expecting to go back to work after my morning appointment with him–but Matthew and I talked it over and figured it made more sense for me to just get it over and done with.

The reason I need to have lumbar puncture chemotherapy is because blood cancers like lymphoma and leukemia can spread to the brain and cerebrospinal areas, with some–including ones that present in the nasopharyngeal area like mine–having a higher likelihood. However, most chemo drugs can’t penetrate the blood-brain barrier, and because of that, the cerebrospinal area is considered a “sanctuary” location for cancer cells. So even though my original lumbar puncture biopsy was clean, it’s possible the sample missed cancer cells if there aren’t very many. As such, it’s standard procedure to administer chemo drugs via lumbar puncture to cases like mine in addition to the regular cycles of chemo cocktail I’m on. I’m slated to have a total of four of these lumbar puncture chemo sessions.

One down, three to go.

The procedure itself was kinda ouchie at first, felt like the big nerve in my lower back and down my leg was being twanged and pinched repeatedly…which, I guess it was. But the nurse/doctor (I’m not actually sure if it was a nurse practitioner or a doctor doing the procedure) was extremely responsive, communicative, and kind, and she saw I was in pain–both from the change in my breathing and my yelp–and switched to the smaller (black v. yellow*) needle. That switch made all the difference. It went from unpleasantly uncomfortable to hardly more than a minor prick. She also made a note in my folder to use the black needle on my lumbar punctures from now on.

Also learned an interesting factoid. When administering chemo via lumbar puncture, they take out exactly as much spinal fluid as chemo drug that they plan to inject in order to maintain the fluid balance. The spinal fluid they took out they’re sending to check for cancer cells. Waste not and all, I guess.

Little sore still this morning, but at least no spinal headache. Went back to work today as this drug (methotrexate) isn’t expected to have the same level of side effects as the rest of my chemo cocktail, and I’ll be out of the office after tomorrow’s round three infusion blitz through the new year.

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*Isn’t it so apropos that the needle color indicators are bee colors?

This round of chemo, thus far, has been easier on me than the first one, but there are still some surprises to enjoy, apparently.

Still struggling to control the chemo-nausea, but it’s getting better. Weaning off the Ativan, drinking more ginger ale, taking Zofran round the clock, and continuing to take Benadryl as a just-knock-me-out recourse. This strategy seems to keep the queasies mostly under control.

However, now I’m having the onset of a shiny, new side effect: annoying tingling in my hands and feet (i.e., peripheral neuropathy)–I assume due to the Vincristine in my chemo cocktail. It’s not terrible, but it is quite uncomfortable. When it got truly unpleasant yesterday, I took a Benadryl to render me comatose and felt better when I regained consciousness.

Benadryl appears to be my new panacea for side effects. Yay unconsciousness.

Have been queasy all weekend and have now reached the tradeoff point where I’m willing to try the slice-of-hell jittery again if it will offset the pervasive, constant nausea.

Just popped a dose of Compazine (a.k.a. jittery hell) with a chaser of Benadryl (hopeful mitigator of jittery hell) to go with the round-the-clock Zofran and Ativin.

Let’s see if this makes me less miserable or more.

Yesterday was a good day. Aside from a bit tired, felt the best I had in months: no pain, no sickness, engaged and focused at work. A memory of what being healthy–well, as healthy as my human suit gets–was like.

This morning, thought I was going to have another good day. Felt energetic and chipper, pain free. Went out with Matthew to run a couple errands even. But think I might have overdone it. We were only out for an hour or so, but by the time we got home I had a headache and started feeling sick. Now I am thoroughly miserable and hurting.

Have taken drugs. Many many drugs. If they are helping, then I don’t even want to contemplate how awful I’d feel without them. But honestly, it feels like they’re barely making a dent.

Next week I’m slated to have my second chemotherapy infusion on Wednesday with my neulasta injection to follow on Friday morning. Technically, I should have the chemo on Thursday, but for obvious reasons*, Thursday wasn’t good for scheduling purposes.

Being on the tail end of chemo cycle one, I feel a bit better prepared, expectation-wise, for this upcoming session. Everyone says the first one is the worst. If that’s the case, sure, I got this.

Of course, the one after this one (chemo cycle three) begins the intrathecal (lumbar puncture) infusions. I feel far less cavalier about the prospect of those.

[*Just realized it might not be obvious to folks who aren’t on the American holiday calendar. Thursday is our Thanksgiving holiday.]

Had a follow-up doctor’s appointment yesterday with my oncologist at Emory’s Winship Cancer Institute. We discussed a couple things in greater depth.

The neulasta injection I’m having the day after my chemo infusion is actually not usually given to people my age but rather to folks having to undergo chemo who are over 60. But since my immune system is so fail from lupus/MCTD, my doctor and his team figured it a wise precaution.

Firstly, it’s a bit depressing that they consider my immune system on par with that of people two decades older than me, but more importantly, the injection is the likely culprit for the intense back pain I’ve been having. Glad to have an explanation for that. And also it’s indication that the shot is working. (It stresses bones as it causes a heightened production of white blood cells.)

On a related note, they did blood lab work yesterday, and my blood count is rebounding a-ok from the chemo. Whew. It’s actually in decent enough shape that I’m considering going back to work this week. I’d previously decided to take this whole week off, but I’m feeling pretty good and a bit cabin fevered. (And I think I’m really exhausting Matthew. I keep waking him up in the morning to keep me company but he still goes to bed at his usual night-owl time, with the result that the poor thing is getting really sleep deprived.) We’ll see how today plays out.

We also discussed the radiation therapy I’m slated to have at the end of these six cycles of chemo. We didn’t go greatly in-depth about it, but it sounds like it’ll be fairly rough. Due to the location of the tumor, there’s a decent likelihood the radiation will hit my salivary glands, which could have long-term affects. Sigh.

And, very important bit here, we discussed the jittery feeling I’ve been having. It seems that the anti-nausea medication I’ve been taking every eight hours, Compazine, has “jittery” as a fairly common side effect. I went off it yesterday–with Zofran now as my primary anti-queasy drug to take as needed–and took some Benadryl at bedtime, and I can’t express how much better I feel today. I thought jittery and I were old friends; I’m totally addicted to my caffeine. But this was different, way worse than even the most jangly over-caffeinated binge. I was feeling pretty desperate to find some way to stop the jittery, and having it fading from my system is so very much a relief.

So yesterday I had a consultation appointment with the Winship Cancer Institute boutique about a “cranial prosthesis” (i.e., wig). I tried on several models and have come to the conclusion I really don’t think I’m a wig person. I think I’ll be exploring other options–like chemo scarves and, of course, hats. I never thought I was a hat person before either, though. Maybe I’ll end up going with “bald.” After all, Persis Khambatta as Lieutenant Ilia in Star Trek looked pretty hot…

One thing the consultant did say that hadn’t quite registered before: it’ll be over a year before my hair comes back. Of course it won’t just magically return at the length it is now once chemo finishes. It’ll take time to grow back and all. For some reason, I just hadn’t thought it through. Urg.

So…chemotherapy. The actual session was fairly easy on me. Long, over seven hours of sitting in a chair attached to a tube dribbling toxins into me. But I tolerated it pretty well.

It was afterwards that really nailed me. As soon as I got home, I spiked a fever of 102. Tylenol brought it down to under 100; otherwise, we were looking at a trip to the ER. And since then, I’ve been incredibly drained. It’s taking all the energy I have to write this blog post. I’m a combination of incredibly exhausted and jittery. I’m not sure if the jittery is from the prednisone or the other chemo meds, but it’s a really unpleasant combination.

Also, my mouth is terribly dry. Food tastes weird…or doesn’t taste at all. But on an up note, the anti-nausea drugs appear to be doing their job. So far, no queasy. *crossing fingers*

Today is better than yesterday. And yesterday was better than the day before.

Appointment with my oncologist today at Emory’s Winship Cancer Institute went pretty much as expected. All the results from the surgical biopsy still haven’t come in yet, but we’re starting treatment on Thursday anyway. If the biopsy results reveal some potential oddities or unexpectedness, we’ll add meds to the chemo cocktail. But the core treatment will remain the same, and consensus was that it was best to start treatment now (a bazillion yeses!) rather than wait any longer.

My treatment regime is currently slated to be six, 21-day cycles of the R-CHOP chemo cocktail (rituximab, cyclophosphamide, doxorubicin, vincristine, and prednisone) followed by radiation. Four of those cycles will be delivered directly to my cerebral spinal fluid via lumbar puncture…sigh. I’m also getting a neulasta injection after each chemo infusion to try to bolster my immune system since it’s already pretty compromised starting off the bat.

My first treatment, this Thursday, is expected to take something like seven hours (o.O!), although subsequent ones should be faster–five-ish hours or so. Debating if I should bring my laptop, try to get some work done, or if my smartphone and a book will be sufficient to keep me from imploding out of boredom.

Aside from the side effects I expected–nausea, hair loss, other various GI distresses, etc.–my doctor also said that the chemo might trigger early menopause. I wasn’t prepared for that possibility. Children were never an option for us, so early menopause isn’t really a devastating prospect, but I was kinda blindsided by the idea of it–having to deal with all the changes that come with menopause in addition to everything else.

My oncologist also said I need to avoid crowds in order to decrease the chances of me picking up a random infection or bug, which we already knew, but we hadn’t quite made the logical repercussions step.

I take the train to my day job. Public transportation is pretty much the definition of crowds.

So, for now, the plan is for Matthew to drive me to the capitol during my treatment on those days I’m well enough to go in. Also, I might ask my work folks to see if I can get a temporary parking space for the next six to eight months. I relinquished my spot in the capitol’s deck several years back when they jacked the price up. Not really keen on having to get a space again, but not really keen on having poor Matthew chauffeur me every day, either.

Results from the lumbar puncture and bone marrow biopsy came back. Both were clean. So much whew, there!

The PET scan data came back, too, but is still undergoing a full/comprehensive evaluation. The preliminary review indicates no lymphoma involvement below my diaphragm, but possible lymphoma presentation in my chest–although if that’s the case, it’s relatively minimal.

So currently, based on these test results, my doctor believes my lymphoma to be at Stage IIE (“E” indicating “extranodal,” as the primary tumor is outside of a lymph node system).

We’re still waiting on the results of the surgical biopsy–which involves a chromosomal mapping to further identify the type of large B-cell non-Hodgkin’s lymphoma I have–in order to establish my treatment roadmap. The delay appears to be due to cultures actually having to be grown.  (Sigh.) Hoping these result will be in by my appointment on Tuesday. If so, we may begin treatment as soon as Thursday.

I hope so. My current pain management regimen has been getting less and less effective, and the tumor is now causing a significant amount of gum swelling and consequent pressure on an upper molar such that the tooth is now loose. I’m hoping I won’t have to lose it.

Still, we’re making progress. It feels horribly slow, but there’s nothing to do  but continue waiting.