Sing a Song of White Cells

Reminisce about the Mamas and Papas, and sing along if you know it:

Monday Monday, so good to me,
Monday Monday, it was all I hoped it would be
Oh Monday morning, Monday morning couldn’t guarantee
That Monday evening you would still be here with me….

—————————————————————————————————–

OK, so it’s Tuesday noon, and the rest of the lyrics aren’t so cheerful, but —

Another Monday come, another chemo session gone.  Number 7 down, 17 more to go (give or take adjustments along the way).

The Popsicle Report:  Yesterday was a jackpot.  TWO popsicles, not served one after the other as before, but double-barrel.  One blue, one green, so I could even alternate between the tubes, though the green was again a really weird flavor.

“Keep it comin’, yeah, keep it comin’ now · Don’t stop it now, don’t stop it, no, don’t stop it now, don’t stop it, no …  “

The music soundtrack has again kicked up in my brain, even though I’m awake.  My apologies to all of you for a reminder of KC and the Sunshine Band.

Yesterday’s session went well.  I checked in for the usual blood draw and was glad to see my white cell count rebounding, compliments of the two Neupogen shots last week.  We finally cleared up the insurance issue, and I actually got the stuff delivered FedEx to my doorstep.  For some reason (and any of you on the list who know more about the drug-insurance system than I do, please enlighten me), since the drug is expensive, and we were planning to do the injections at home, our local pharmacy  couldn’t be authorized to dispense it, and it had to be shipped by a specialty pharmacy down in Portland, Oregon.  Now I can’t complain about the home delivery since it certainly makes things easier for me, but the confusion and restrictions seem unnecessary.

To my great good fortune, the shots did a world of good (once I got past the emotional frustration of having to take yet another drug because I have a serious illness).  My white cell count doubled over that of last week (from 2.0 to 4.0, putting me at the low end of the normal range, and making me less likely to pick up infections, I hope). Consequently, the mouth sores are rapidly improving, which does a world of good for my appetite (I might even be up for some kim-chee soon!). And I’ve got the “magic mouthwash” (that is seriously what they call it) to chase away any remnant sores.  It’s a mixture of lidocaine (for pain), an antifungal drug, and that miracle steroid, dexamethasone.  (The name of the mouthwash reminds me of a leaflet I once received from a pediatric dentist we took my son to for a filling.  The staff there gave me a list of terms I was to use to help defuse any anxiety the child might have about getting the filling. I was to call the drill a “whistle” and the nitrous oxide was not “laughing gas” but “magic air.”  Seriously.)

The downside of the Neupogen is the side effect of bone pain, primarily in the legs.  The pain stems from the action of the drug pushing the bone marrow to produce more white cells.  I had one bout of it that started around lunchtime Sunday — felt like someone had kicked me hard in the left knee with residual aching the rest of the day. Some Tylenol took the edge off, and it had disappeared by Monday morning.

The substitute doc I saw yesterday (new guy, but seasoned.  Practiced 26 years in California.  I didn’t think I should ask why he left CA.) said we can perhaps reduce the shots from 3 to 2 per week, or lower the dosage of each shot, since the white cells responded pretty well to the first two.  This is apparently an undefined area in the treatment. The chemo drugs are set dosages at set times, but the ancillary drugs prescribed to help patients get through the chemo can be mixed and matched, titrated and revised, according to what works for each patient.  This makes much more sense to me than the steamroller approach I got last week.  I never did start on the antibiotic she recommended, and this week’s doc confirmed that it probably wasn’t necessary.

I did have one bout of intense stomach pain on Friday around lunchtime.  Felt like that proverbial knife being twisted in the stomach.  Perhaps this was the excess acidity the steamroller talked about last week, but eating made the pain disappear and I haven’t had any trouble since, and have not felt it necessary even to take the OTC Pepcid we have at home.  The “grazing” approach (think like a cow, eat small amounts of food throughout the day) seems effective to keep stomach troubles at bay, and since the white cell count is up, I may be able to go back to the probiotic supplement the naturopath prescribed, which helps digestion but can’t be taken if the white cell count drops to 2.0.  I see him for follow-up tomorrow.

I have lost a few pounds in the past couple weeks, but that doesn’t worry me.  I’m currently at 98, which has been my “set point” since my teen years (except for those “weighty” times of pregnancy and working a couple summers at a Girl Scout camp downing starches in the cafeteria).  The 3 or 4 pounds I’ve lost was the yo-yo weight I’ve picked up and lost repeatedly over the past couple perimenopausal years.  My energy level is still good.  The only changes I’m noticing are some periodic sleepiness (not body fatigue, but a strong inclination to close my eyes), and some fatigue in my thighs when I walk uphill to the mailbox or the golf course.  I played as my daughter’s partner in the parent-junior golf mixer on  Saturday and we came in third.  OK, so it was only a field of four pairs in the girl’s group, but still, our score of 61 on 9 holes beat the 99 we shot two years ago.

Meanwhile, I continue with physical therapy.  The therapist said my arm function is up to about 80%.  I’ve got almost full rotation and can lift the arm above my head but not yet straighten it completely.  The therapist is another well-seasoned veteran — 36 years on the job. I am greatly appreciating those among us with years of real-world experience.

The rest of the infusion procedure went routinely yesterday, and I will see my regular doc and have the next round on schedule next week.  But now it’s time to graze again.  Moo.

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Egghead

The Popsicle Report:  Red again, the frozen sugar water in the plastic tube. Two red tubes going in — one in the mouth, one in the port in my chest.

Someone asked — why the popsicles?  The idea is that the colder temperature lessens the effect of the Adriamycin in the mouth and therefore the tendency for canker sores. Even with this scientific theory, it’s a nice treat.  Used to be they’d recommend putting an ice bag on the heads of chemo patients, thinking that the same temperature principle would help prevent hair loss, but the nurse tells me they found it didn’t really work.

Someone else asked why chemo patients lose their hair.  It happens because the drugs  attack cells that divide rapidly (as cancer cells do).  Other cells that divide rapidly are hair cells and cells in the lining of the mouth (thus the mouth sores) and a few other places.  The drugs can’t differentiate between cancer and hair cells, so they’re all affected.  There are a number of chemo drugs, though, and not all of them have this effect.  With Adriamycin, it’s a given that the hair will come out.

And come out it has.  The process started a couple weeks ago.  By the end of last week, I lost a handful every time I ran the comb through what was still there.  (Geez, I had a lot of hair!)  My poor son was a bit startled when I mentioned that my hair was starting to come out and — children’s curiosity being what it is — he came up and pulled.  He stood there with a puzzled look on his face, wondering what to do with the handful of strands that came out. Anyway, by the end of last week, a bald spot appeared, and the remaining hair felt so heavy and flat that I decided it was time to take it all off.

Once again, it was good to have a neurosurgeon in the house. I didn’t really want to go somewhere I’d have an audience for my “debut”, and my husband *has* had a bit of experience shaving heads in the operating room.  So he got out his back-up electric razor and took off the rest of my hair out on the deck on Saturday.  A bit emotional for me, but I had the calm water to look at and my dog’s fur to run my fingers through.  The irony of it, yes — and the hair that came off was almost as dark as the dog’s black fur. (Been highlighting the top tresses so long I didn’t realize how dark the roots were!)  My husband said I look like a monk (not a bad thing from my view), and thought it funny that, given my head shape, I wanted eggs for lunch.

It actually feels better to have the hair gone.  I don’t have to be careful with it anymore, my head feels lighter, my morning routine is quicker, and no one can blame me for clogs in the shower drain!  I’m experimenting with the scarves I have.  Yesterday, after the infusion session, we went to a wig shop.  What a hoot that was.  Rather like trying dead animals on your head. (Maybe I should get a Davy Crockett hat.)  There was the Twiggy look (had to explain that one to my college-student helper since she didn’t know who Twiggy was. — No, I’m not THAT old! –).  The sexy vixen look.  The grandma look.  But no Michael Jackson or Kim Jong Il.  For now, I’ll stick with the scarves.

The infusion session went routinely. Strangely, I felt happy to go (6 down, a quarter of the way through the whole series and halfway through the Adriamycin part, which is supposedly the hardest).  But I saw a different doctor (my guy being out of town), and the more she talked at me, the worse I felt.  She seemed to assume that I was feeling awful, or that I should be, and I came away thinking, y’know, I don’t feel as bad as she thinks I ought to!  She prescribed 4 new drugs.  Two of them I expected:  a mouthwash to help with this stubborn mouth sore, and injections of Neupogen to help stabilize the white cell count, which my doc mentioned awhile ago as a possibility.  The red cell, white cell and platelet counts have decreased each week, but that’s typical. So I am now officially “immunocompromised.”  The white cells are at a range that I have to be careful about picking up infections or illnesses.  Fortunately, it’s not virus season yet, but I don’t think I’ll be volunteering at the kids’ schools this fall.

The other two drugs she prescribed are a stomach-acid reducer (Prilosec), but I’m not really having much trouble with that and an antibiotic (Bactrym) to prevent infections, which I’m not convinced at this point I need.  I’m not one to take drugs if I don’t have to and we’re all aware of the problems of overuse of antibiotics, not to mention their side effects.  Adriamycin itself is a powerful antibiotic (first time I’ve had a clear complexion since puberty!).  I appreciated this doc’s attempt to be thorough, but it was rather the steamroller effect.  She was following the protocol she used in training at the Fred Hutchinson Cancer Care Alliance in Seattle, which she said she uses for all her patients.  I figure, she’s young, and will season her approach with more years of experience. Next week, I’ll see a different doc since mine will still be out of town.

In the meantime, we have to dive into that murky area of health insurance regulations. Our coverage here is quite good, but the pharmacy requires preauthorization from insurance and the doc’s office to dispense the Neupogen injections, which we can actually do at home (only (!) 3 times per week, and gosh, I think that neurosurgeon who lives here has had some experience giving shots).  But the drug is expensive and the insurance company is telling me they can only authorize the oncology center, so there’s a glitch between the doc’s office and the pharmacy, based on what the insurance company says.  It’s not like this is a controlled substance.  I don’t think anyone chooses Neupogen for recreational use. “Yeah, doc, I think my white blood cells are low, can you get me a shot of that Neupogen stuff?”  (Now the dexamethasone, the steroid they give me before the infusion, might be worth getting hold of for its energy and mood-enhancing effects, but there’s no problem getting that covered!)  So today, it’s more phone calls to get through the obstacles that seem totally unnecessary.

When we’re talking about health care reform, as we are across the nation now, I’d really like to change some of the wording.  It’s not reforming health care (and no one is addressing the fact that there won’t be enough health care workers to cover all the newly insured!). It’s about health INSURANCE reform.  And what’s clear from my individual situation with the Neupogen is that it isn’t the docs and other healthcare workers who need reform. Most of them are just trying to do the right thing for their patients (and most have had to learn how to get around insurance restrictions). So it’s not the “medical-industrial complex”, because that term implicates the people who actually provide the care; it’s the insurance/pharmaceutical industry and their concern for profit margins .

But off my soapbox —  overall, I think I’m feeling pretty good (and isn’t that what matters?)  I have bouts of fatigue, especially on gray days, when I really just want to have a nap, but on the other hand, I “played” (walked and putted only) 9 holes of golf with the family on Sunday.  The mouth sores may be an ongoing thing, my appetite is better in the morning than evening, and some foods are now looking more appetizing than others.  (Cottage cheese and apples, yes; large slabs of meat — nah.  Green tea at lunchtime is a very good thing.)  No nausea (fingers crossed), and I’m sleeping OK. Physical therapy is going well — very little pain and I’ve recovered much use of the left arm.  The scarf on my head is really the only outward marker of the illness (the three scars on my torso no one sees but me).

So, onward and upward….