I forgot to include an update last time about my current schedule for chemotherapy.  My last round of chemo, the one that took me down, was the Wednesday before last.  Not surprisingly, when I returned for the next round the following Wednesday, feeling (and looking!) awful, I was rejected due to low neutrophil counts again.  To give my body a bit of a break, I was rescheduled for today at 5:00 p.m.

While the rescheduling and break are appreciated, the timing of the new appointment is not.  Last treatment, I was scheduled for 4:30 p.m. I didn’t get called back until 6:30 p.m. Then the nurse forgot to start one of my drips and didn’t realize it until it was supposed to be finished 30 minutes later. I finally returned home at 9:45 p.m.  Hopefully, tonight will go more smoothly.  I’ve got some Netflix shows to catch up on anyway.

That being said, if for some reason I don’t receive chemotherapy today, I imagine I’ll be moved to Wednesday again.  If I do receive treatment today, I’ll be back on the Monday schedule, unless my blood cell counts drop again.  So, it’s a wait and see situation… all depending on the numbers.

Whew.  Before I discuss the events of this past week, I just have to say how grateful I am to feel well enough to write this.

I spent the majority of the past week in bed, mostly just waiting for the sickness to pass.  I felt weak and tired and nauseous.  I also had severe congestion, a cough and trouble sleeping.  I remember the feeling from twenty years ago – it was always hard to describe.  It’s kind of like having the flu or mono except that you don’t feel well enough to do anything but lie there, thinking about how you’re sick and tired of feeling sick and tired.  Reading, even watching t.v., takes too much energy.  So you try to sleep the time away.

Lying there, I drifted through many thoughts and emotions.  I was disappointed. I was frustrated.  And I was even sad.  Maybe my memory of the first time down this road twenty years ago failed me.  Maybe I was overly optimistic.  Maybe I was naive.  But I truly believed, rightly or wrongly, that I was going to be able to do this thing without much trouble.  I was strong, healthy, positive.  I’d done it before.  I knew what to expect.  It was only twelve weeks.  Easy peasy.  Bring it on.

And then it took me down.  I couldn’t fight back.  I couldn’t get out of bed.  I could barely eat.  I got tired walking up the stairs.  I just had to lie there, defeated.

Last week, before I became confined to my bed, one of my health care providers referred to me as stoic.  That’s what I wanted to be.  I wanted to go through this saying, “Yeah, it’s unpleasant, but I’m fine.”  I didn’t want to complain about the “little indignities” associated with treatment.  It is what it is, and you just take it and keep going.  I have reasons for wanting to handle it this way.

I believe, and science shows, that a positive attitude is the best defense against illness.  Those who wither and crumble in the initial doctor’s visit, at the diagnosis, with the first unpleasant side effect are already halfway down.  This IS unpleasant; this DOES suck.  But you can’t let it take you down or you’ll stay there, or worse, slide farther down.

Also, I don’t want to be the person whose only conversations center around aches and pains and the unpleasantness of it all, appearing to seek pity and sympathy.  I was so surprised and humbled by the way my friends rallied around me from the beginning, offering so much help in so many ways.  I felt uncomfortable with the attention and the gifts.  A friend said, “Well, now you know why some people fake cancer, if you’re the kind of person who likes that.” I find it difficult to be the recipient of such thoughtfulness.  I can’t seem to separate talking about the negative aspects of this journey from the scent of attention-seeking and self-importance.  And yet, I’m trying to be honest.

And that’s why I was sad.  I felt like I’d failed.  It got the better of me and I didn’t even have the energy to get angry and fight back.  I had to admit to everyone that I wasn’t able to handle this stoically.  Now, feeling better and perhaps thinking more clearly, I know that it was bound to happen.  I’m literally poisoning my body.  How do you get through that without feeling sick and tired? (This reminds me of an old Bill Cosby joke:  “‘And tired’ always followed sick. Worst beating I ever got in my life, my mother said, “I am just sick…” And I said, “And tired.” I don’t remember anything after that.”)

I’ve been surprised by the power of these drugs.  Last time around, I had six rounds (18 weeks) of Adriamycin, nicknamed ‘The Red Devil’ for it’s hue and hellishness.  Surely four rounds would be easier, especially without The Red Devil in the mix.  But these two drugs, mostly the carboplatin, have brought more side effects and unpleasantness than the prior drugs.  Yes, I’m twenty years older.  But I was in good health.   No heart problems, no diabetes, no kidney, liver, thyroid, stomach or lung issues.  No asthma, no allergies, no weight problems, no high blood pressure.  Time after time, as I went through my health history with my providers, they would say, “Wow, you’re really healthy.” (To which I would reply, “Yep, except for this cancer thing!”)  As I sit in the waiting rooms at MD Anderson, I look at the older patients and think about what a struggle it must be for them.  Add this toxin to their other health issues and it’s a wonder they’re walking around at all.

I can say that I’m (mostly) back to a positive place.  I’m grateful to feel well enough today.  I’m grateful to be going through this at 48 instead of 78.  I’m grateful to my friends for their notes of encouragement and repeated offers of help.  I’m grateful to my mom for spending the better part of the week with me, caring for me and my son, cleaning my house and weeding my yard (oh, to have her seemingly endless energy!).  And I’m grateful for my general good health, which I know will return in roughly six to eight (short) weeks.

We did proceed with chemotherapy yesterday – eventually.  My appointment was for 4:00 p.m., I finally went back at 6:30 p.m. and was released at 9:30 p.m.  Part of the delay was the result of my nurse forgetting to start one of my drips and discovering it thirty minutes later when it should have been finished.  Ugh.

The good news is that I felt great yesterday and today.  I’ve had more energy than I’ve had in weeks.  I didn’t even realize how blah I felt until I felt better!  Just in time for the carboplatin to kick in and knock me down.  But maybe not!  The acupuncturist added electrical stimulation to my treatment, which is designed to provide further protection against nausea.  I’ll follow up with another treatment tomorrow to try to put a damper on the nausea before it gets up and running.

I’m officially half way through treatment, which is great, but it’s difficult, too.  I’ve left the “Rah Rah, Let’s Do This” phase of the beginning and I’m not yet into “The End is Near” phase.  I’d call the middle the “This is Getting Old” phase.  I think I’m more aware of this feeling because of the two-week break I had from chemo.  My body was starting to function normally, without the annoying side effects like rashes, dry skin and nosebleeds, to name a few that are appropriate for sharing.  But, in fact, the end IS near.  Six weeks goes by quickly most of the time, and it will from this point as well.  Maybe some Tom Petty in the playlist will help with the waiting.

Not this kind …                       … this kind.

Everything seemed to be going well last week.  Even though my white blood cell count was too low for chemo, I felt pretty good.  Then Saturday came along and instead of an evening on the town, I spent the evening in the emergency room.  I started to get chills and body aches Saturday afternoon.  My son had been sick with a cold during the week so I figured I caught something from him.  My fever began to rise, and following the protocol for a fever when you’re neutropenic (low neutrophils), I headed to the ER once it had been over 100.5 for an hour. I spent about 3 1/2 hours there while they ran blood and flu tests and did a chest x-ray.  Everything was negative, so the assumption was made that I caught a virus and just needed rest and chicken noodle soup.  Fortunately, my white blood counts had returned to normal, so there was no longer a real concern about the fever.

Sunday morning I was still feeling a bit puny, so I stayed in bed (and missed my son’s soccer game – boo!).  By afternoon I felt much better and visited family for my sister-in-law’s birthday.  By evening, I was not feeling well again and noticed that I had swelling around the tissue expander on my left side.  (These were inserted at the time of my bilateral mastectomy to stretch the skin for reconstruction to be performed at a later time.)  I slept very poorly Sunday night, again battling body aches and a bad headache.  I had an early morning appointment with my oncologist, and she agreed that there were signs of an infection and it was best to postpone chemo once again.  I was placed on antibiotics but may be able to proceed with chemo on Wednesday if the drugs seem to be working. I also do not have to make up the missed session of Taxol from last week – we’ll just head straight back into the Taxol/Carboplatin combo that was so enjoyable a few weeks ago. 😉  They will adjust the dosage, though, so hopefully that will reduce the side effects I had previously.

So my new chemo day will be Wednesday each week (provided we go forward this week) and I’m still on track to finish in the same time frame.  Only six more weeks of this unpleasantness.  I can handle that.

I was actually excited for yesterday’s treatment since it would mark the half way point.  Unfortunately, it didn’t happen.  My neutrophil count (a type of white blood cell that leads the immune system response) was too low to proceed.  Normal range is 1.4 – 7.5 and mine was 0.24.  Yikes!  The frustrating part is that I feel absolutely fine!  The nurse said it can take up to two weeks for the chemo drugs to affect the white blood cells, so this is probably another side effect of the nasty round I had two weeks ago.  I’ve been advised to avoid large crowds, sick people and any other sources of contamination to ensure that I don’t become sick since my immune system is so compromised right now.  Fingers crossed that we’ll be back on track next week.