It is later than I should be up, and it is thunder storming outside, good, because once again, I did not water when I should have. I am counting on Mother Nature to help me out these days. So far, so good. Thanks, Mother Nature….keep this up, please.
A couple of things, as it is late (late is now any time after say 9 PM)
I am mostly doing fine, the first chemo was the 14th, so this is about day 12 or so post treatment and I still have hair. Not for long, as it is getting buzzed tomorrow in anticipation of the total loss of hair expected between now and day 15 or 16. I had a moment this AM, while blow-drying my hair as usual, that perhaps I would be the one person in chemo history *not* to lose her hair… Call Guinness Book of Records… yeah, that’ll happen. So tomorrow, on nearly everyone’s good advice, I am going to a supportive person, Darlene who runs “Lovely Lady Boutique” (for people like me) and she will buzz me and style Dee Dee (the wig).
I am accumulating a little collection of hats and scarves and head toppings. I am looking to bulk purchase teal bandanas, as teal is my cancer’s official color. Wish it were purple or fuchsia, but teal it is. This, like many other things, is simply out of my control.
Who knew when those yellow, then red, then pink ribbons appeared, so many years ago, that an industry of sorts was being born. Pretty much, these days, if your disease or issue doesn’t have an official color, you might as well forget about it. I should have invested.
So, the “theme” for the first round of chemo is “chemotherapy is not a walk in the park”. After I had the first treatment on Friday the 14th, it went well, I guess, and then I went home after six hours, where my Mom and I played another game of Scrabble (I beat her this time, but the game, like most of those we played over the next couple of days, was close). I went to sleep a bit early, but was nausea free (thanks to the big GSK drugs) and woke up Saturday AM feeling “normal”. So did the regular Saturday errands, went to a birthday party for twins where they had ponies, you know, normal stuff. Felt pretty darn good. Kept taking the anti nausea drugs as instructed.
Sunday…awoke not nauseous so thought I would try it without the drugs and see how that went. Tried to swing my legs off the bed and holy crap! The most killer pain in my legs and joints/bones!!! Like one of those round metal truck things they use to smooth cement had run over me in my sleep, several times. But sort of from the inside out, not bruises but pain/ache/pain/ache/pain/ache. Took therapeutic doses of Ibuprofen, which did not even touch it. Mid-day I broke down and took big pain pill, leftover from the surgery. Good thing I had a lot leftover, because this pain lasted through Tuesday. I am usually not a pain-wuss, but this was something else. I am so grateful Mom was there, not only for the Scrabble distraction, but she helped a lot with Sofie. Sofie is being pretty darn cooperative about the whole “Mommy is feeling a little uncomfortable today” messaging. Most of the time.
So, the other things they (they is the team, the folks that are now controlling my health, recovery, treatment, whatever). They are concerned about the big drop in my white blood count after one week, (I get blood tests weekly now for the next four or five months) and also my red blood cells. I dropped there too. That accounts for the fatigue I am noticing. I am ok in the day mostly now and don’t need naps as I did during the bad pain time, but I am really tired by say, 8:30-9 PM. Which essentially means:
I put Sofie to bed, and then I put Debra to bed. Not to sleep, I watch HBO or Showtime on demand, or read but essentially I am in for the night. This evening is a huge exception, probably due to the ice cream cone sugar infusion earlier this evening (it was Ben and Jerry Free Cone Day, I had to!!!).
So, a few things to know:
Please do not be offended if I do not answer the home phone (or cell) after 9 PM EST, I could actually be sleeping or resting!
Nobody would guess I am fatigued at all during the day. My energy is still greater than many folks not on any medication during the day. I know I am waning a bit, but it is not all that obvious, I don’t think.
So far, the chemo has not affected my appetite. I am getting worried, if I cannot experience a loss of appetite on chemotherapy, there is no justice in the world. I might have to fake it.
I am starting a list of “Ten Good Things About Chemotherapy” (inspired by a borrowed book called “I would rather do chemo than clean the garage”.
1. No need to shave legs this summer
2. Will save several hundred dollars on haircuts and color
3. I am learning the lost art of scarf tying
4. I can get a lot of sympathy by “pulling the C-card” if I need to
5. I am forgiving myself for not having my house in perfect neat order….”I am just too tired to do it now”
6. Hair care in the morning is about to get a lot easier, I think
That is all I have so far, but I suspect there will be more.
It is funny, I realized the other day that it is completely against my nature to do what I am doing now, turning over my free will to the medical establishment! I did it during the period of my life when I was doing fertility treatments and now, once again, my body is not completely my own. I take enough pills in the AM to substitute for breakfast. And I had to buy the large Costco size of Benefiber. I won’t bore you all with the details.
Now, for the part that some will not want to read….so consider yourself warned!!!
The other part of this whole thing that is a bit overwhelming is the medically induced menopause. Prior to this, although my chronological age was right up there, I simply wasn’t experiencing the symptoms of menopause, even though every medical person assumed or thought I was completely over it!
So imagine my surprise the first morning I woke up around 5:30 AM, sweating and hot. First thought (I swear, this is true) “damnit, I must have left the heat on overnight”.
I padded to the thermostat to squint at it, only to see that it was fine.
But I clearly wasn’t!
Like a time delay process, it dawned on me…..so this is “IT”. Yuck. Maybe it will only happen this one time. Optimist that I am.
It is now happening more, as I was told to expect. They (those medical folks again) cannot really tell me how long this might last, or how severe it might get. So I am just trying to keep a sense of humor about it, breathe through them and consider it just part of the hand I was dealt. We will see how long that lasts. I did pack up all the warm nightwear, as that seems like a silly idea now. I make my own heat!
I admit to being a bit anxious as I face the razor tomorrow. Melissa Etheridge looked hot bald and so did Samantha on Sex and the City (Kim Cattral would look hot with a plaid head). But I am neither of those gals and so I hope I don’t feel too self conscious.
I have started to see bald headed women in more places in the past week or so. Did I simply not notice before?
OK, I really do have to sleep, so good night all. I will let you all know when the blog and the photos are up.
Love to Alan (and his faithful dog Kimo) for shaving their heads (and for Kimo, pretty much the whole dog) in support.
The full photo gallery will follow as soon as I can do it.
Love to all of you who constantly remind me that I am loved and prayed for and the recipient of good, no make that great, energy.
Next chemo I am going solo, but someone will drive me. And I purchased a “summer read” type novel for entertainment.
More about the Care Team next update, I meant to write about that, but it deserves its own update or blog entry. Trust me on that!
YIKES, big thunder, I bet Sofie wakes up and wants to sleep with me.
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