Chemotherapy 4: A Step Forward and a Step Back

       On Thursday Feb. 19 I had my second chemo treatment.  Sort of like going to your home-away-from-home.  I sat in the waiting room trying to decide which patients were wearing wigs.  Only one person had on a bandana.  Then a woman sat down opposite me and was coughing.  She covered her mouth, but still I cringed.  Here are all these people with suppressed immune systems and this is the perfect venue to catch some infection.

       Anyway, I get called in and I get a different nurse this time.  I really liked the first one, but this one gave me the impression that she would rather be anywhere doing anything than helping us poor chemo patients.  When you're on chemo, they give you continuous saline along with the drugs, so you have to go to the bathroom about every 45 minutes.  The first time the nurse was very solicitous about helping me get there because with my arthritis I'm not too agile, but this time I'm on my own.  So there I am, unplugging myself, climbing out of the recliner, staggering along as I roll the IV stand, trying to get the heavy bathroom door open ...  Oh, well, guess it's good for me to be self-sufficient.

       This lasted from 9:00 AM until 2:00.  By afternoon the whole thing had gotten pretty old. I was actually terminally bored.  Then I had just about received all the fluids when THE FIRE ALARM WENT OFF!  Yow!  A bunch of little lights started flashing on the ceiling and this klaxon-like siren started screaming!  I knew it was a fire alarm because the other day when I went for an appointment, the lights were flashing in the hall and there was a fire truck at the main hospital entrance.  Then the lights went off and a voice came on: "Code Red all clear -- Code Red all clear."

       In the chemo room everybody burst into frenetic activity.  Somebody said it was a drill, but of course nobody knows for sure.  My original nurse took charge of me, unhooking me from the port, and grabbing my arm, saying, "Can you walk down the stairs?"  I said, "I can if I have to!  Glad it's not upstairs!"  So we headed for the door and about that time the alarms quit  and everybody relaxed.  Somebody said to me, "I guess that woke you up." 

       I felt fine on Friday, but now I have to take Neulasta shots, so I went on Friday afternoon and got one.  This is supposed to stimulate the growth of white blood cells, which are low in my case.  The problem is, it causes bone pain because it affects the bone marrow.

       And boy, on Saturday I felt horrible.  First, they had insisted on giving me intravenous Zofran, which I am sure constipated me before.  And lo and behold!  I was constipated immediately after the chemo treatment.  I'm going to insist they leave it out next time.  So I'm back on the Miralax regimen -- this time I'm not waiting because I definitely do not want to have to take magnesium sulfate again.

       Second, the Neulasta does make you ache.  Yesterday it was awful -- mostly in my arthritic joints, like the knee, and also in my hands.  Also, yesterday I was so fatigued I could hardly move.  Kinda makes me mad because I had been feeling really good.  Now my appetite has disappeared again, although I still don't have nausea.  But food feels funny in your mouth.  I noticed that after the first chemo treatment, too.

       It's now Sunday, and I do feel better this morning.  I'm not aching as much and I'm not so horribly fatigued.  Also, the Miralax seems to be kicking in.  The evidence that I do feel better is that I felt like writing this blog post.

       I had wanted to have scrambled eggs for lunch, and I may still try for that, although it's a lot of work.  I'll see how enthusiastic I am for that when the time rolls around.

Hair Update

     

       Very thin now, but still I have some all over my head.  I washed it this morning (Sunday) and it came out in clumps, which got tangled up with the hair that was still attached and I looked like I'd stuck my finger in a light socket.  I had to untangle it manually and a lot came out.  I'll be just as glad when it's all out.   I think I might actually be a little better looking than this turkey vulture!  My beak isn't as sharp!

Turkey Vulture
Who says bald isn't beautiful?
http://smithsonianscience.org/2013/11/study-shows-turkey-vulture-doubly-blessed-with-acute-vision-and-sense-of-smell/

Chemotherapy 3: Better News

    

"It is a Warrior's drink!"

       Following up on the last post -- I didn't get results and last Saturday I did go to the ER, which was a complete bust.  I do not advise going to the ER for constipation.  They gave me a bottle of Magnesium Citrate and then an enemy (Freudian slip -- I meant to type "enema"), which did not work at all.  Then they wanted to give me the stuff they give for colonoscopies, but I refused in horror and told them I just wanted to go home.  Actually, they seemed to expect the Mag. Cit. to work instantaneously, but it doesn't do that with me.  After I got home, it started up and worked for 24 hours.  I'm not exaggerating.  I was absolutely miserable and had my first nausea in the middle of the night.  I did take a Zofran and it fixed the nausea, and I'm happy to say I've been fine since in that regard.

       I could have bought the Mag. Cit. and taken it myself at home -- it's over the counter.  That's what I'm going to do the next time.  However, I did get some good advice from the doctor in the ER.  Miralax twice a day for a while.  I'm happy to report that seems to have worked.  Now if I can just get everything regularized permanently ...

But now for the good news!

       I had blood drawn on Tuesday and they ran the CA125 test.  That's the test for the cancer antigen.  It's not always reliable for diagnosing cancer, but they use it to measure whether the chemo is working.  And apparently it is, because

my level was originally 107 and now it's down to 11!

And a little Googling revealed that normal levels are below 35, so it looks like things are on track!  I take my next treatment next Thursday.  I hope it doesn't get worse as it goes along.

Hair Report

       I had been told that hair doesn't begin to come out for a couple of weeks, and lo and behold, they were right!  Last Thursday marked two weeks since the first chemo treatment, and on Friday (yesterday) I started to shed like a long-haired cat.  It's not coming out in clumps, just five or six hairs at a time.  I get a few if I tug on it, and it's always hanging down over my glasses or tickling my nose.  When I look in the mirror with the sun shining on me, I can see a bunch of hair on my shoulders.  Wonder what my bald head will look like.  Will I have weird knobs or protuberances?  Maybe I'll discover I'm growing antennae!  LOL

Chemotherapy 2: Don't Read If You're Squeamish about Bodily Functions

       

From: http://www.driddings.com/cancer-centers
I've got one exactly like this!

       Those of you who follow me on Facebook know that since beginning the chemo, I have not been nauseated at all, which is great!  I've been taking Zofran, an anti-nausea drug that appears to really work.  I was supposed to take one pill morning and evening for four days, and I dutifully did that.  I believe they also infuse you with Zofran while they are giving you the chemo drugs.  After four days, you're supposed to take it as needed, and since I didn't seem to need it, I haven't taken a dose since yesterday morning. 

       It's been a week and one day since I had the first chemo treatment (it seems like fifty years!) and I do have a problem.  It's constipation.  It started immediately after the treatment.  After the anesthesia for the port implant, I had a slight uptick of constipation, but a couple of Dulcolax did the trick, with no cramping or other side effects.  After the chemo treatment, I took two Dulcolax and I had terrible pains in my stomach all night.  Finally I got up at 3:30 AM and ate breakfast, because for me that usually jump-starts the digestive system.  It worked, but the results were rather strange.  I won't go into nitty-gritty details.

       I called the nurse in my doctor's office and she told me I wasn't following the proper laxative protocol, which involves using Senakot-S because it doesn't cramp so much.  So I tried that, but I'm bad at swallowing pills, and the Senakot pills are a little too big for me -- and chewing them is atrocious!  They have a hideous taste that lingers as a bitter aftertaste for an hour, and actually they start to dissolve the minute you put them in your mouth.  Furthermore, you're supposed to take two and if that doesn't work, you take two more, and that doesn't work, then take three and even on to four.  In the meantime you're miserable because nothing is working.  I want something that works fast!

       I did get a slight result after taking four pills, but nowhere near enough, so I called the nurse again and told her I was going to try taking one Dulcolax and see what happens.   Well, nothing happened.  In total annoyance, today at midmorning, I took two more Dulcolax and then for lunch I ate a really big bowl of All-Bran cereal and an 8-ounce glass of prune juice.  And I thought, if this doesn't work, I'll have to go to the ER

       Then I got to thinking that maybe I'd better call the doctor's office again, because the weekend is coming up and somebody ought to know what I'm doing in case it kills me.  The same nurse wasn't there, so I talked to a different person.  Of course, that means getting differing advice.  I had asked about using a suppository because the laxative protocol said not to do either that or an enema without the doctor's OK. The nurse said, no, don't do that because you have a low immune system right now. (Not sure how that applies -- I suppose the idea is, you might introduce some bacteria into the body on the suppository.)  Anyway, this new person I talked to said I should use a suppository.  I told her what the nurse said, and she consulted some other people and said, "No, it would be fine to use a suppository."  You know, it's a wonder anybody survives.

       So I told her I intended to wait and see if the two Dulcolax and the bran and prune juice gets anything going tomorrow morning -- if all that doesn't produce, there has got to be something else wrong with me.

But that's not the whole story!

       I asked my adviser if Zofran might possibly cause constipation, and she said, "Yes, it could."  Arrgh!  If that's the problem and I don't need to take it, maybe once I get through this siege, I'll be OK.  Maybe I never needed Zofran in the first place.  I have another drug called Compazine (also an anti-nausea drug) that she said is much less constipating, which I can just take as needed.  So far, no need.

       I asked a friend who had chemo 30 years ago about her reactions, and she said she was nauseated but never constipated.  I don't suppose they had Zofran in those days.  Anyway, I'm not a happy camper right now.  I just can't focus on anything creative, although I did do some work yesterday on Fathers and Demons.  We'll see what happens tomorrow.

And if that isn't more information

than you ever wanted to know,

I don't know what is!

But maybe this will be useful to somebody else

in the same predicament.

By the way, I still have my hair.

Link to Chemotherapy 1 

Chemotherapy 1

A Saga of My Cancer Treatment

       On a happy note, the nurse who was administering the chemotherapy asked me what I had done for a living and I said I was a retired librarian.  She said, "I might have guessed a teacher, because you're so well organized!"  And I said, "But since I've been retired, I've become an writer!"  "Oh, what do you write?"  "Science fiction.  I'm an independent author and I've published eight books.  Here's one of my cards."  "Oh, wow.  Maybe we could read one of your books at my book club."  "That would be great!  They're available at Amazon as both ebooks and paperback."  "Nook?"  "Oh, yeah, Barnes & Noble, too!"  And away the nurse goes to do her work.

       Probably she immediately forgot all about the exchange and when she pulls the card out of her pocket tonight, she'll say, "Where'd I get this?" and throw it in the trash.  Sigh.  But one can always hope!

       Some background:  In response to a sudden appearance of post-menopausal bleeding (should you ever get that 21 years after menopause, don't delay in visiting your gynecologist) I had a D & C and was diagnosed with a form of endometrial cancer designated as serous papillary, which is a more aggressive form than ordinary endometrial.  Wouldn't you know?  I was referred to the local GYN Oncology Group (two surgical oncologists) and after a CT scan and other tests showed no evidence that the cancer had spread, I had a hysterectomy on Dec. 18.  They used the DaVinci robot -- only got a brief glimpse of it before the anesthetic kicked in, but that's pretty cool.  I ended up with a horizontal incision and five little slits midway up the abdomen where lymphs nodes were removed.  I was absolutely miserable for three weeks, but finally I started feeling halfway normal and then pretty normal again.  So it was time for chemotherapy -- they don't want you to feel good for very long!

       First I had to have one more surgery, however - to implant an IV port beneath the left shoulder blade.  It's semipermanent -- the doctor said they leave it in two years in case you need more chemo later.  It goes into the subclavian vein and thence into the superior vena cava.  This is so the chemicals can get into a vein with fast blood flow so they won't sit in one place and irritate the vein.  They can also draw blood from that port.  The port has a diaphragm under the skin through which a needle can be inserted.  They use a topical deadening again so you don't feel the needle going in.  You might think this port would be uncomfortable, for example, when you lie on that side, but you know, it doesn't bother me a bit.  I can feel it under the skin and of course I have a two-inch incision.  But honestly it isn't so bad.

       The good thing is, there was no evidence that any cancer had spread to the lymph nodes.  However, chemotherapy is recommended because of the aggressive nature of this form of cancer.  There could be some wandering cells.  I have to have three to six sessions, depending on how well I do, spaced three weeks apart.  And so yesterday I had my first treatment.

       They scare you to death, you know, with descriptions of all the horrible side effects.  The truth is, there is no way to know how any given individual will be affected.  The doctor said he had a 93-year-old woman with ovarian cancer who was tolerating the chemo fine, while a woman in her mid thirties was not doing well at all.  So I was nervous about the whole thing, but I certainly want to kill off anything that may have escaped.  They monitor it by blood tests, particularly the CA-125, which shows a certain antigen that is shed from the surface of cancer cells (if I understand it correctly).  Mine is elevated now.  They'll test for it two weeks after each chemo session and it should begin to go down.

       They sent me to the Rocky Mountain Cancer Center, which is located conveniently in an adjunct pavilion at the same hospital where I had the surgery and where the oncology group has their offices.  The session was supposed to last 6 hours, and I had to get there early to fill out paperwork, which they had neglected to mail to me.  It turned out that I only had to fill out part of it because "we didn't realize that you were being treated by the oncology group [well, didn't they do the referral] so we have all the data from them."  Duh.  Anyway, you get assigned a different doctor at the Cancer Center, a medical oncologist, who sort of monitors what happens to you over there. 

       You are allowed to eat before and during the administration of the chemo, but you have to bring your own lunch!  (They do have a refrigerator for storing perishables.)  The doctor said they see a hundred patients a day and they can't really afford to feed them all.  I guess I can understand that.  You know, I hadn't fully realized how many people in our society have cancer.  At 8:00 AM the waiting room was crawling with people!

       I had watched a YouTube video on how they access the port and it led me to believe that the chemo was administered in a private room or cubicle.  So I was floored when the nurse led me into this gigantic room like a dormitory, crammed with recliners and nurses' stations and nurses and patients and noise!  I was given a chair and assigned a nurse who was really nice (the same one who asked about my writing) and we got started.  I got two pillows, one under my knees and one behind my head, and a nice warm blanket, and a chair on which to place all the junk I had brought with me (home away from home, you know).  I brought a pair of woolly house slippers (next time I think I'll just wear them from home).  Heck, I think you should go in your PJs, but maybe that's stretching it a little bit!

       I recommend that anybody going for one of these sessions wear a buttoned shirt.  The nurse agreed.  In the video that I watched, the girl had a t-shirt, which she had to pull down and hold while they inserted the needle.

       Anyway, they give you a whole mix of of medications, included a whopping dose of Benedryl.  The nurse said, that's to minimize allergic reactions, but the effect is to make the patient really groggy and sleepy.  I brought some reading material, but most of the time I just dozed or stared into space.  They give you Zofran intravenously, which is to combat nausea.  They give you a steroid.  And then they start the chemo.  I'm having Taxol and Carboplatin.  The nurse said it's a standard combination.  The Taxol took three hours to administer, but the Carboplatin took only 40 minutes.  I ate my snack (banana and yogurt) and my lunch (canned chicken with bread and butter, cottage cheese with tomato cut up in it, and three canned apricot halves), but I was finished with the treatment by 1:30, so it didn't take the whole six hours. 

       I had no reaction to anything.  The nurse said the steroid might make me feel tingly in my extremities, etc., but I felt nothing.  (Maybe I'm not alive!)  After I got home, however, I was really tired, and I also felt first cold even though the day was warm, and then after I went to bed at eight, I got to sweating.  My stomach hurt a little, too.  The upshot was, I didn't sleep very well last night, even though I took my ibuprofen PM (I take that primarily because of my arthritis).  I've been sleeping really well lately.

       Outside of that, I've had no reaction yet at all.  I'm taking Zofran in tablet form twice a day, and it must be working, because I don't have even trace of nausea and I'm really hungry.  I felt much worse in that regard right after the surgery.  I had been planning to have chicken soup and crackers for supper, but when I got home, I thought, I want something solid and substantial, so I cooked a piece of Foster Farms Crispy Strips chicken in the toaster oven along with about 10 (mostly small) french fries, slathered it all with ketchup, and ate it up!  I'm quite certain that is not something they would recommend as a meal following chemo!
       I feel completely normal today.  However, they say that it takes a few days for the reactions to kick in, so ... we'll just wait and see.  I keep pulling on my hair, but it's still firmly attached.  It's not supposed to start falling out for a couple of weeks.  Oh, yes, one other thing: the nurse said they had a bunch of free hats for bald people that they were giving away, so I took three of them!  I'll try to get some pictures of myself looking like the thing

that came from outer space!

I wonder -- 
why do the little gray men never have hair?

Too much treatment with chemicals, I guess,
in order to keep their aging DNA from blowing up.

      

       I'm planning a series of these posts to keep everybody informed of my progress or lack thereof.  At the moment I'm optimistic and hopeful that I can take the full course of treatment and

kick those little bugger cells' asses!

      

 Footnote: It's now the second day (Jan. 31) and I slept good last night, but I'm very groggy this morning -- feel really out of it, so the reaction must be beginning to kick in.  I still have no nausea, though.  I'll get this posted and plan to do another post in a week or whenever I feel I have something to report.