I didn't really want to post my health status on the Web
in a really public place like Facebook, but e-mail
has its own issues. So I figured I'd bury this blog-like thing
on my regular web page, and anyone who managed to get to it
would probably be actually interested.
Also check out my
Newer stuff is toward the top. Or you can begin at the beginning.
If you're inclined to donate to the cause, may I suggest you consider the Anti-Cancer Belly Dancers, which is my team for the local Relay for Life event to benefit the American Cancer Society.
Or, the following are some organizations that have helped me personally.
Also, you can support me directly if you support beledy.net.
Medically, things are great. My blood tests from the oncologist (back in October) were fine. My PET scan (back in November) was also fine.
I went back to Oasis Dance Camp again during the first week of November. I was feeling so much better than I was last year (when, you may recall, I had gone one week after my last chemo), that I was inspired to do a special dance in the show, which I dedicated to everyone who remembered what I was like the previous year (I posted the video on YouTube, at right).
My hair continues to grow, hurray! It's now been growing just over a year, and it actually hangs over my collar. It's long enough that I can squeeze the water out of it after I shower, and put it up in a towel! I can feel it swing back and forth when I shake my head. It's still curly, and it occurred to me that around the face it kinda looks like Farrah Fawcett's old 'do :-) (Not the overall length, but the way the hair flips away from the face.) Whoo hoo!
I talked to the ACS people again about the Relay for Life. They're finally fully staffed again (they'd lost a couple of people, which is why there were problems with closing out the last one properly). Things have started moving again, so I decided to go ahead and re-up my team... so we're on for May 21-22, 2011! Here are the links (different URLs from last year, easier to type :-)
And, with that, we're all caught up. And, since it's now been a full year since the end of my active treatment, I'm doing well, and there really isn't a whole lot interesting going on, I think I'll close this blog out, wishing everyone happy and HEALTHY holidays!
October 6, 2010
Take it as a good sign that I go so long between entries :-)
I've been very busy dance-wise, but not too much medically.
My hair has been growing, as you can see in the pic at right.
Meanwhile, I did have an adventure with the ACS about Relay. The wrap-up party that we thought was going to be Sept. 20 did not happen, and when I found out it wasn't happening I got really pissed. So I went down to the ACS office ranting and raving, because my team is due some awards and rewards. They did manage to calm me down and promised some followup, and there's been some, but not much.
September 2, 2010
There was an error in my previous entry; I got my stitches out
today (Sept. 2).
The skin biopsy determined the petechiae were tiny hemangiomas--just a cosmetic problem, no treatment required. YAY!
Also, it looks like we'll finally be having our wrap-up party for the Relay on September 20. Not totally firm yet; we just got a note asking if that date would be OK. Oh, and by the way, the Relay Web sites are being refreshed for the new 2011 season, so the links I gave a few months ago (in the Feb. 25 entry) won't be working for a while, until they're rebuilt.
August 24, 2010
A couple of updates:
So, I went to the dermatologist... he decided he should take a biopsy of a spot on my arm. He did it right there in the office... all I felt was the needle sticking me with the anesthetic, then I basically didn't feel anything. Of course, I was careful not to actually look at what he was doing. He closed it up with a couple of stitches, and the pic at right is what it looks like today, almost a week later. Looks kinda like an ant biting my arm. And see those red spots? Those are the petechiae. (Yeah, I know it's a weird pic to post, but I was "inspired" by the pic my Mom sent me of her toe :-) The dermatologist said it'd take about a week to get the biopsy results. And I have an appointment on Sept. 3 to get the stitches out (and presumably discuss it more).
Meanwhile, there's been some feedback that we might have some Relay followup sometime next week. We shall see.
August 16, 2010
Well, time marches on.
I see it's been a while since I posted here.
No major news, but here are a few updates:
My followup with the oncologist went well. Everything is looking good. I ran into Paula (the chemo nurse) in the hall as I was leaving (I haven't seen her since I stopped chemo, I don't think) and she gave me a big hug and said I looked great!
A week or so later, I got my numbers from the CA-125 and HE4 tests and they're also looking fine.
Today I had an appointment with my regular doctor, mostly about the petechiae. We decided the next step with that is a dermatologist, so I have an appointment for that scheduled for Thursday.
As for our Relay, I haven't heard anything at all since it ended.
There's supposed to be a wrap-up party where they give out
awards and stuff and try and sign people up for next year.
A problem is that our ACS staff person no longer works there;
she got a new job with the American Lung Assn.
a fellow committee member (and survivor) is supposed to be
attending some sort of meeting related to Relay on Wednesday,
so I'm hoping she'll find out something then and let me know.
July 18, 2010
A few days ago I looked at myself in the mirror
and thought if my hair was only green, I'd
look like an oompa-loompa
Willie Wonka and the Chocolate Factory).
So I went checking around on the Internet for
a photo (at right) and decided maybe not so much.
Indeed my hair had taken the same general shape
of going up at the top, and out at the sides, and
kinda flat elsewhere, but it still wasn't long
enough to tie into a knot on top.
And with that random bit o' weirdness, I have a couple of other odd bits of news:
On July 2, I went to another Relay (the Central Boca one) to do the survivor thing again. I went to this one because the survivor dinner was being provided by Bonefish Grill, and they have really good food :-) And, I wasn't disappointed.
This coming Tuesday is my next followup appointment at the oncologist. The only other medical news is that I had my regular annual mammogram a couple weeks ago and it was normal.
The big news is that today is my BIRTHDAY!
(Happy birthday to ME, happy birthday to me!)
Sponsored, in part, by the American Cancer Society, because,
as they say, a world with less cancer is a world with more birthdays!
June 29, 2010
WHOO HOO! We did it! The Anti-Cancer Belly Dancers not only
our Relay, but we totally blew them away with
our team spirit!
We had a fabulously decorated tent (harem-style, of course),
a nifty banner, and we participated in most of the events
and special laps (even ones that were not announced).
I think we're a cinch for their "Most Spirited Team" award,
but I don't think we find that out officially until, like,
The picture at right is us doing our team lap at 8:15am on Sunday, wearing our hip scarves and playing finger cymbals... and still smiling, even though most of us had been there since 1:30pm the previous day. The picture below is a luminaria one of my friends had donated to be set up on the track in my honor. I've posted more of my pictures of the event on Facebook (you shouldn't need to be on Facebook to see them).
June 23, 2010
Well, the major news is
that our "All Night on the Ave." Relay for Life event is
coming up this Saturday.
I've been busy doing Online Chair work as well as being busy with
the planning for my team (Anti-Cancer Belly Dancers) stuff.
Our fundraising has gone quite well so far, and we'll have some
other things going at the event.
We're planning some major decorations for our tent, as well
as what we need to do to make it through the whole night.
Also, my friend and teammate Joani signed on to be
Luminaria Chair for the event, so we're all helping her out with that too,
Luminarias are basically candles lit in honor of someone who has had
cancer; they make a whole ceremony out of lighting them at Relay.
There's a lot to do; I'll let you know how it all works out.
I mentioned going to the hemotologist last month, so here's
the update. I did go to the Delray hospital for those blood tests;
it turns out they don't actually do
those diagnostic procedures "in" the hospital, but in an outbuilding.
No biggie; all they did there was draw 6 vials of blood.
So this past Monday I went back to the hemotologist for the results.
Nothing. All the tests were normal.
He was dumbfounded; said he'd never seen that before.
So, we know I have no blood diseases, which I guess is good,
but we're not sure what to do next.
I see my regular doctor in another month or 2, so I guess I'll ask
him when I see him.
May 31, 2010
No real news today; I just wanted
to show how my hair is coming along.
You can see it pretty well in the pic at right
(yeah, the shadows and the sunglasses make it a bit
hard to see my face, but my face hasn't changed!)
They were right about the hair coming in different:
it's curly, and very soft, and the color is a much darker
brown than my old hair.
And, I swear I did not have so much gray before :-)
It's probably getting close to 3 inches long...
One of my dance friends recently commented, "Gee,
your hair is getting higher all the time!"
I'm not doing anything with it, just letting it do what it wants.
I don't want to intimidate it in any way.
As long as it's growing, I'm happy.
May 24, 2010
Well, today I had an appointment with a hemotologist.
This was for something unrelated to the cancer, except perhaps
during the course of my treatment, it happened a few times that
who was sticking a needle into my arm
would comment that I had petechiae (little tiny blood spots
in the skin), and
that if it didn't go away, I should get it checked.
This is usually a symptom of low platelet counts, so I had to wait until the chemo was over to get it checked (because chemo can mess up those numbers). But since then I've been to my regular doctor a couple of times, and he's run some tests. But my platelets are normal, and all the regular stuff looks fine, so he referred me to a hemotologist.
So, today's appointment was a quickie, because this doctor had apparently already gotten my latest blood test results from my regular doctor. He said this was "weird" to have it with normal platelet counts, so he ordered some more lab tests that I need to have done in the hospital... not stay there, just have done there, as I understand it. But I need to wait at least a week to do that, because I took an aspirin yesterday and apparently that can mess up the tests.
Sigh.... if it ain't one thing, it's another.
May 2, 2010
The new news is that yesterday I went to another
Relay for Life to do the survivor thing.
This was the Relay for Life of Deerfield Beach and Lighthouse Point,
held at Quiet Waters Park.
I wanted to do this one because I like the park,
and because I wanted to experience one that was more
a "community" one than a "school" one.
The survivor dinner was quite good, and
the event was fun, with some decent entertainment.
Among other things, they had these guys dressed as
Star Wars characters walking around and posing for pictures,
so I got mine taken (right).
Meanwhile, my Relay team, the Anti-Cancer Belly Dancers, is moving along. As of today, I have 7 teammates (all of them also troupemates), and our fundraising is going well.
Then there's the old news; there are several things I had wanted to mention in my previous post and just forgot.
A couple of posts back, I mentioned that it seemed that my eyebrows and eyelashes were falling out... again. At that time, the only real evidence was that I was seeing more-than-the-normal-amount of them falling out. But now it's more visible: I still have eyelashes, but they seem to be shorter than they were just a few weeks ago; and the eyebrows are definitely sparser and patchy, so much so that I really need to draw them in again when I go out. Just when I was thinking I was done with that.
At the dance seminar I was at last month, the sponsors gave me a little Ganesh figurine (left), as a token of their support in my fight. Ganesh is the Hindu deity with an elephant's head, and is the remover of obstacles. (They had intended me to get it several months ago, but there was a problem with the vendor... no biggie; support is always good.)
Also, I found out one of my dancer friends is married to an oncologist, who happens to be the guy who invented carboplatin (one of my chemo drugs).
I'm finally getting started putting together a
Frequently-Asked-Questions document about
cancer and my experiences with it, so if you
have any questions you'd like to see answered
in a FAQ, please let me know
(sir (at) beledy.net).
April 24, 2010
OK, it's been a busy few weeks... part of that was doing taxes,
which I mention here not just as an excuse, but also because
I had enough medical bills last year to be able to
get a deduction for them.
This is the first time I've been able to do this
I guess since they limited the amount you could take
for medical deductions.
Speaking of insurance, last year I also maxed out my out-of-pocket expense for that, so the insurance ended up covering 100% of my surgery in December. That was a relief.
Another major thing is that I've been getting back to dancing more lately. During the time of chemo and surgery recoveries, I had always kept practicing with my troupe, but I was kind of thankful we had only a very few performances to do, and we could do a rather slow piece that wasn't too hard for me. (The piece we did at Camp; I posted a pic earlier in this blog.)
But finally, the last few weeks I've been able to perform some more energetic numbers. Toward the end of March, my troupe did a medium-tempo number in Pari's recital, then 2 days later we did 2 very lively numbers at Asiafest. April 10 we did a rather long drum solo number at a bellydance seminar in Miami (at right is me with makeup and "tribal hair" (and attitude) for that, although I haven't yet put on the rest of the costume). (I also took both days of classes at that seminar, and was a lot more tired than usual at the end... perhaps I was trying too much too soon.) Then just 2 days ago I did a 1-hour show with some friends. We all opened and closed the show with some group improv, and we had some audience participation in the middle, and we each did a couple of solo numbers. These were my first solo dances since before I started chemo, and it felt real good to be doing them.
Meanwhile, on the medical front, I had an appointment with my regular doctor on Monday and my first follow-up appointment at the oncologist's on Tuesday. Both went well; I'd say both netted out to my telling them "I feel just fine" and them saying "That's good." At the oncologist's, the nurse practitioner found out I was a belly dancer and got all excited and had to ask me questions about it, so I demonstrated some moves for her. We both ended up laughing a lot.
That's another thing I've noticed lately.
I'm feeling very happy and laughing a lot.
I guess that's a sign that the stress is passed and
I'm feeling better.
April 6, 2010
Just a couple of odd things I thought I'd mention.
The first is that my eyebrows and eyelashes seem to be thinning out... again. I've seen reports about people losing their eyebrows and eyelashes every few months after finishing chemo, after their hair had grown back. These were at informal discussion sites on the Internet, not as part of any "official" medical info. The reporters seemed surprised, since they hadn't been advised about such a side effect. I also haven't heard of it either, except I'm not really surprised. It seems logical if you consider that all the hairs start regrowing at the same time, and they probably have similar lifespans, and so they probably all max out their lifespans and fall out at around the same time, and the cycle starts again. Eventually they should randomize enough where it won't be so obvious. (It would be an interesting thing to model mathematically, if you had the right data about number of hairs, average lifespan, standard deviations etc. for the bell curve.) In any case, I suspect that the reason you don't hear about it from the "official" sources is that it's not really a direct side effect of the chemo... it's more like a side effect of the side effect.
The other odd thing is I've noticed that all my fingernails now have light-colored bands across them. I often watch TV programs about forensics (both fiction and non-), and I've seen on those programs that this is an indicator that the person has been poisoned. So I'm inferring that this is another odd side effect of the chemo. Hmm... I wonder if it's visible on my toenails too?
March 27, 2010
I've been really busy since the last update, mostly a bunch of
odds and ends.
The main health-related thing was I went to the Relay for Life
event at FAU (Florida Atlantic University) in Boca Raton last Friday.
The main reason I went was to check out what these events
are like, since I signed myself up as a team captain
Anti-Cancer Belly Dancers (ACBD)
for their Downtown Delray event in June.
For the FAU event,
I signed myself up as a survivor and planned to walk the
survivor lap (the initial lap) and do whatever else it was
that survivors did there, without having to stay too long.
Alas, there was some confusion about when it started. After signing up, I didn't get any additional info about the event, which seemed odd to me. The info I did see said the walk started at 3pm, so I arrived shortly before 3. They were just setting up. Then I heard the opening ceremonies started at 5pm, but I decided to hang around because it didn't seem that far off. It was fun watching the various teams set up, and most of them had on-site fundraising activities. For example, there was one woman selling jewelry that I kept going back to look at as she was putting it out for display. I ended up buying 3 things from her--all teal-colored :-) I found out the survivors got dinner, which sounded good, because I was getting hungry. Then I found out the dinner wasn't until just before the survivor lap, which wasn't until 7pm. Oh well, I could hang in there until then.
So, we got special purple survivor T-shirts and a sash to wear, which I'm modelling at right. (It was a bit chilly at the event so I was wearing more layers, so you couldn't have seen them well even if I had gotten a picture of myself then.) The teal-colored sash on my arm is something I bought from one of the teams there--it has "outlast" written on it in puff paint. The dinner was spaghetti and breadsticks from Olive Garden. When it finally came time to do the survivor lap, it was really nice--the sun was just setting, the crescent moon was low in the sky, and everyone was applauding as we walked around. Below is a picture; I'm off to the right, wearing light-colored jeans with a khaki-colored overshirt and blowing bubbles.
After the survivor lap, all the teams joined us for a victory lap. I left shortly after that. Although I had spent much more time there than I planned to, it was fun and interesting, and I learned some things about how it all works.
Meanwhile, back at the Downtown Delray Relay, we had another committee meeting, and I've been working on stuff for their website. Among other things, I set them up on Facebook (which I already had experience with), and also on Twitter (which I didn't). Also, we decided on a theme, "All Night on the Ave", which was an idea that I came up with.
And my ACBD team now has 5 other members (all fellow troupemates), and our fundraising is doing pretty well, although it's still early.
March 15, 2010
OK, here it is! The first published photo of my hair since,
well, since I started losing it.
The picture at left
was taken Saturday when a bunch of us girls went to
see a local production of Fiddler on the Roof
which was directed by our friend Laurel.
Our friend Lamis brought her camera and took lots of
snapshots of us and posted them of Facebook.
I figured since they'd been posted in public already, I
might as well pull one to post here, for readers of this blog.
Although I might have preferred one where I didn't have my
glasses hanging off my neckline,
I chose this because you can see my hair
(on some of the pictures it would blend in with the background)
and you can also see my earrings; I think the
hoop-style earrings look nice with the short hair.
At right is a picture I had taken at home the day before, with the intention of posting it here, not expecting to be scooped by Lamis on Facebook. But I think it's a nice picture (even if you can't see the hoop earrings very well), so I decided to include it here too.
Oh, and you might be interested to know that I figured that this is 3 months worth of growth... almost to the day. It definitely seems to be longer than Mark's.
March 11, 2010
The main updates I wanted to make today aren't actually new items,
but a couple of older things I think I forgot to post before.
The first thing is something that happened back in November or so. I was at my appointment with the oncologist right after I'd finished the chemo. Of course I had no hair then, so I was wearing one of my wigs. He asked me to remove the wig, so I did. He looked at my denuded head and said, "Lots of money for a haircut, huh?" Now, I had to wonder if he had some medical reason to want to see my head, or if it was just a setup for the joke. Not that I'm complaining; one can't be too serious all the time. (I was reminded of this story this past weekend... Now that I have a little hair, I've been going out without any head covering (unless it's cold). So a friend saw me and complimented me, "Your hair looks nice." So I said, "Thank you. It was the most expensive haircut I ever had." She had to ask why; when I told her it was from the chemo, she was surprised. (I can't really keep track of who I told, or who might have been told by others.) But I guess that means it isn't so totally obvious, which I guess is a good thing.)
The other bit of older news I forgot to mention is that I did get my Good Wishes scarf from France Luxe after I got back from Egypt. It's zebra print, and really very lovely. Plus, they sent me a personally-signed card wishing me well, which I thought was an extra nice touch.
Meanwhile, there's been some activity on the Downtown Delray Beach Relay for Life event. I mentioned I'm doing some volunteer work for the organizing committee for that (I'm the "Online Chair"); we had our first committee meeting last week.
In addition, I updated the Web pages for my Anti-Cancer Belly Dancers team, along with my personal page for the Relay, and also started an Anti-Cancer Belly Dancers group on Facebook. Plus, the team now has a couple of additional members besides myself. They are, not surprisingly, fellow members of my Rising Phoenix Dancers troupe. And, we got our first donation (that didn't come directly from a team member). That came from my parents! Thanks, Mom and Dad.
February 25, 2010
Two main things to talk about: the Anti-Cancer Belly Dancers,
and my trip to Egypt.
So, first: I have now officially started the "Anti-Cancer Belly Dancers" team for the Downtown Delray Beach Relay for Life event. I haven't gotten around to customizing the Web pages yet, but they do function and you can make online donations to us there. Here are the URLs:
And second: Most of the time since the last entry I spent on a trip to Egypt, with Oasis Dance Camp-Luxor. I was planning this and looking forward to it long before I was diagnosed, so I'm really, really glad the treatment schedule didn't interfere with it. (It did make it harder for me to make the payment schedule, but fortunately the organizers were very understanding and allowed me some flexibility.) Overall, the trip was delightful. I did develop a bit of a cough toward the very end of the trip, which apparently turned into something like pneumonia after I got back, but that really had nothing to do with the cancer, which is actually kind of a nice bit of normalcy. While I'm not totally recovered yet, I'm feeling much better now...
Anyway, because I was travelling in
an Islamic country (and because most of the time it was
actually fairly chilly),
I usually chose to
wear a head scarf, similar to the pic at right.
In fact, I was asked many times if I was Egyptian, or Muslim.
But one evening I decided to wear my "Cleopatra-style" wig to go with my Egyptian caftan (pic at left).
And another day, at the step pyramid, one of the guys showed me a different way to wrap the head scarf (below):
Meanwhile, in related news, my hair continues to grow in. It's really soft, and actually kind of thick. It almost looks normal, except for being short (about 1" long now), and of course too gray for someone my age :-) So today is the first day I went out in public (i.e. further than my mailbox) without wearing some kind of head covering. But no, I don't have a picture yet... (I'd hoped to get a picture of Mark and me when I was visiting my folks after Egypt, but it didn't work out, what with me getting sick and all.)
January 29, 2010
I've been pondering whether it makes sense to continue this blog,
considering as things have pretty much settled down, medically.
But I'm thinking yes, it does, because there are still a lot of questions
Like, what will happen in my followup appointments with the oncologist?
What will happen with my fundraising activities (currently still pending)?
And, perhaps most importantly, what will happen with my hair?
Will it grow back in curly?
When will it look OK enough that I don't feel I need to
cover it up in public?
When will it actually start looking "normal"?
And what is "normal" anyway?
So, while we're waiting to see how my hair comes back, I thought I'd share some photos showing what I've been doing with it (or rather, the lack of it) in the meanwhile. We'll start with the pic at right, showing me in one of the wigs I got from the American Cancer Society. I call this one "Marlo" because it kinda reminds me of Marlo Thomas in the old "That Girl" TV series.
January 23, 2010
It's been a while since my last update, because there hasn't
been much going on. Which is actually kind of nice, because
things were really crazy there for a while.
Time has gotten really distorted... like it seems like it's
been at least a year and a half since I was in Canada visiting
my relatives, and it's actually only been 6 months.
Anyway, the medical news is I had an appointment at the oncologist this past Thursday (the 21st), which was mainly a followup to the surgery. They confirmed that my healing is progressing very well, and that I could pretty much resume normal activities, although I still need to be careful about anything that's too bouncy. (So no jumping on trampolines for a while.) So I'll be seeing them every 3 months now, mainly to make sure the cancer doesn't come back.
The hair continues to grow, but I can't say there's much obvious progress. One thing that I've found interesting is how easily my head gets cold. The last few weeks we had some quite cold weather here in Florida, and I found I was having to wear a hat or scarf even inside the house all the time. Even when I went to bed, I had to put something on my head. Back when I'd first found out that I should expect to lose my hair, I did a lot of Internet research on how to handle it. One tip was to get a "sleep cap" because you can lose a lot of heat through your head, but I decided I didn't need that because I lived in Florida and it doesn't get that cold here... well, in hindsight, that probably wasn't the best decision. The knots on scarves tend to make them uncomfortable to lie down in, and most hats aren't shaped so you can wear them to bed. So I made do by using the T-shirt turban pieces and just draping them over my head.
In the meanwhile, I've also been looking into ways to "give back" to cancer organizations, in particular the American Cancer Society. It's not totally finalized yet, but I'm planning to do the Downtown Delray Relay for Life in June. I'm planning to form a team with some of my dancer friends, called "Anti-Cancer Belly Dancers." Also, I'm helping the local ACS group out with some online work related to the event. As I said, this is not all firmed up yet; I'll keep you informed as things unfold.
January 6, 2010
I found another company that offers something to help
has a program called "Good Wishes," where they give away scarves and
head wraps to women with hair loss from illness or treatment.
I've contacted them, explaining my hair loss and that, although
it was growing back, it was still going to be quite a while before it
They said they'd "be very happy to" send me a scarf soon.
I just gave them some color preferences, so the
pattern will be a surprise.
And yes, the hair continues to grow. I actually started shaving my legs and armpits again this past week--the hair there was patchy, but where it was growing, it was getting long. So, progress is being made, but... The eyelashes are still short. The eyebrows are growing in better, but are still patchy and short. The head hair is still short, and my hairline is reminding me of my brother Mark (right).
December 28, 2009
I forgot to mention in my last post that my next appointment
is in 4 weeks (Jan 21, if I recall correctly).
Presumably they'll determine then that I'm all healed from my
surgery and can resume all normal activities.
have an appointment with my regular doctor the preceding Monday
(this is the appointment that was rescheduled from when I was in chemo).
Other than that, I guess the main thing to report on is how my hair is coming along; it's been kind of a mixed bag:
December 24, 2009
Had my surgery followup appointment with Dr. Recio this morning.
The incision is healing very well, although I still have a
bit of swelling and numbness in the area because your insides
take longer to heal than your outsides.
They reviewed the pathology reports from the parts they
removed and they all came back basically "no sign of malignancy."
What that means is, at this point in time, I am
That is what I wanted to hear for Christmas!
And on a similar cheery note, I want to share this picture of the lovely flowers I got from my dancer friends (they were supposed to come while I was in the hospital, but there was a mixup with the date, so I actually got them last Friday):
December 18, 2009
Here it is Friday, after getting out of the hospital Wednesday.
The surgery was apparently successful; I'll know more details when I
have my followup visit to the oncologist on the morning of the 24th
(yes, Christmas Eve).
What can I say, it was a hospital visit.
What I noticed most was how quickly I made improvements. Monday afternoon, after the surgery, I wasn't able to do much more than lay around and nod off occasionally. Monday night, I was more awake, enough to get annoyed that I couldn't sleep and couldn't move around either. Tuesday, after they'd unhooked me from most of the tubes and stuff, they told me I should try moving around a bit. At first I figured getting up and going to the bathroom was about all I could handle, but by the end of the day I was walking a complete loop around the floor. Tuesday night I actually got some decent patches of sleep, and by Wednesday I was was raring to go to get out of there. In fact, once I got out of bed for breakfast, I stayed out. I either was walking around, or sitting in the chair reading or something.
So I was pleased that it was fairly early (mid-to-late morning) when Dr. Recio's assistant came by to check on me. I was a bit surprised when she removed the dressing from my wound and I saw nothing holding it together--no stiches, no staples. She told me there were sutures (presumably dissolving ones) on the inside, but the skin was held together with glue. This helps reduce scarring. Not that I really care--the cut is along my bikini line, so it's not a place people ever see anyway. She decided I could be discharged, and gave me a prescription for a pain killer. Knowing the drug is a narcotic, and based on my experience with my previous surgery and the previous day in the hospital, I told her I probably wouldn't fill it. Then she also told me I must have a high threshold for pain. I'm not so sure about that. I prefer to think I just heal quickly.
The other improvement I notice is the taste of food. The first solid meal in the hospital was terrible; I could hardly eat 4 bites. They gradually got better, until the last meal I was actually able to eat most of it. And yesterday, after being home for a full day, I enjoyed my first normal-size full meal.
Now I just need to continue to get better and heal, and presumably I'll be all done with this.
December 13, 2009
I'm feeling very pleased with myself right now. I just got back from
grocery shopping, and not only did I remember to bring my
reusable bags into the store, I also remembered to bring my
plastic bags and styrofoam trays for recycling (this particular
store has recycling containers for both those things).
No chemo brain there!
Meanwhile, today is being spent mainly on preparing for my surgery tomorrow. I'm trying to get some chores done, because I'm sure I won't feel up to doing much after I get back. I'm also doing a bowel prep, similar to what I had to do for the colonoscopy. It's a bit easier though--although I have to drink the same stuff, I only need to do one glass every 2 hours, rather than, what was it, every 15 minutes? And by my figuring, following the doctor's instructions, I'll only finish about 1/2 the bottle. Also, I don't need to take any additional laxatives. But, I still can't eat any solid food; all I can have is clear liquids.
Friday I was at the hospital for the registration, which was basically signing a lot of papers in addition to the prelim tests and things. As usual, I would occasionally find humor in what was going on. I don't remember details of what was striking me funny, but I do remember the nurses and other staff would always look at me weird when I started laughing. What's up with that?
Oh, and here's a bit of good news: My hair is apparently starting to grow back! When I checked in my magnifying mirror this morning, I could see some little baby lashes along my eyelids, and a little bit of stubble in the bare spots of my eyebrows. The hair on my head is continuing to grow, and now I am detecting some apparently-new hair near my (former) hairline. My head actually looks kinda dirty right now because a lot of the hair growing in is dark (i.e. not gray). Whoo hoo! I am excited.
December 9, 2009
I haven't posted here lately because, basically, there hasn't been
much to post.
Surgery is still scheduled for Monday the 14th.
I do have to go to the hospital this Friday morning (the 11th)
for what I believe they
call "registration" which also involves pre-surgery
blood tests, chest X-ray, etc.
Meanwhile, I'm still waiting for my hair to start growing back. Every morning I check my hairline in the magnifying mirror, but I don't seem to see much progress. About a week or so ago I shaved my head again because the gray hairs were growing faster and sticking out looking kinda goofy, while the poor normal brown hairs were nothing but stubble. Now I can see they're all growing, and the brown and the gray are a lot more even. But so far, this only seems to be the hairs that I did not lose during my chemo; I haven't yet detected anything that seems to be regrowth of the hair that did fall out.
My eyebrows and eyelashes, on the other hand, continue to get even more sparse, although they're not quite gone yet. I could probably count the actual lash hairs around each eye without even going into the double digits. From a distance, my eyebrows look almost gone too, although in the magnifying mirror they look like they're doing better than the lashes. There, the right one looks kinda patchy, but the left one actually looks almost normal. It's a good thing that God created makeup :-)
November 26, 2009
Well, it's Thanksgiving Day here in the USA,
and this year I find myself feeling especially thankful,
for reasons that are probably obvious, but I'll say them anyway.
One thing is that I'm still here, and feeling well.
Plus, I expect to continue that way
for a long time, because we caught this disease early.
I also thankful that the chemo is over, but even so,
it wasn't that bad.
Indeed, the worst part was losing my hair,
and in the great scheme of things, that's pretty minor.
But the main thing is I'm happy to know I have
a great bunch of family and friends who love and support me
and are willing to be there for me whenever I need them.
Of course, I know this last thing is old news,
but I'm particularly appreciative of it this year.
Meanwhile, I have a couple more weeks until my surgery, so I'm trying to get back into my normal routines. While I was in chemo, I decided it was OK to do only the minimal amount of housekeeping (i.e. only when things really started to bother me, like when the dust bunnies started moving the furniture around). Now, I'm trying to resume my normal monthly schedule of chores--when I stick to the schedule, then things don't ever get so bad that they're bothersome.
Of course, the haircare routine is the one that won't get back to "normal" for a while. It's been interesting how shaving my head changed my routines. For example, when I'm taking a shower and I get to the point where I'd normally do the shampoo, I still kinda get a glitch and think, "What do I do now?" But then, it's a lot quicker to just wash my head than it was to apply shampoo, work it through my long hair, rinse it all out, and repeat that all with the conditioner. Then, after I got out of the shower, I would normally wrap my head up in a towel, but there's no need to do that when I don't have hair. On the other hand, getting prepped to go out takes longer because it's more of a process putting on a wig/hat/scarf, drawing on eyebrows, etc.
So I'm wondering when my hair is going to start growing back. Actually, I haven't lost all of it (so far, at least; as best as I can tell most people who totally lose all their hair lose it after the 4th chemo, and I only had 3). It's just really sparse. My legs or armpits are nearly, but not quite, bare. It's been over a month since I shaved my head, and I can see that there are still hairs up there, and they're growing. The longest ones are sticking up about 1/4"; but wouldn't you know it, they're mostly all the gray ones. But it's so short and sparse that it's hard for me to tell if I've actually lost any more since the last chemo, although I assume I have.
As best as I can find from checking around on the Internet, it takes about a month for your body to recover from the last chemo and start growing new hair. Hair grows at about 1/4 to 1/2" per month, so it looks like I'll be dealing with short hair for quite a while yet.
November 20, 2009
Just a quick update on my visit with Dr. Recio (oncologist)
The PET scan was clear.
We scheduled the surgery for December 14 at Delray Medical Center.
(As a reminder, this is surgery to remove
my uterus, nearby lymph nodes, and the omentum, because
those are where the cancer was likely to spread, if it spread.)
Back in August when we'd first talked he'd said he could
probably do the surgery laparoscopically, but
it looks like that won't work.
After checking me closely, he said I had a large uterus
and so instead I'll be getting another cut on my bikini line.
And I'll be a couple days in the hospital.
But that's it for now... medically, I don't have anything else going on until then.
November 18, 2009
Most of my time since my last entry has been devoted to
Oasis Dance Camp.
The Camp itself was held Nov. 11-15 in
Jekyll Island, GA, but it takes a goodly amount of
time to plan, pack, unpack, etc.
It was only 1 week after my chemo, but there was no way I was going to miss Camp South. I love it, and have never missed one before. I couldn't drive the 6-7 hours myself, but that's no problem--I always go up with several of my troupemates and other dance friends and we carpool. Plus, I knew I'd be with a group of loving, supportive women, and that in itself would be therapeutic.
I couldn't participate in the classes as much as I usually do, but I did watch and occasionally got up and danced when the footwork was easy enough (or when the drumming drove me to it :-) And I did perform with my troupe in the show (photo below by Sue Peel; that's me at front left, in the turquoise (and wearing my Happy Feet shoes, not that you can see them very well)):
Yes, I wore a wig for that performance, but I knew I didn't want to be wearing a wig all day long, every day of Camp. One of the really nice things about a Middle Eastern themed event like this is you can wear turbans and similar type headwear and it all seems perfectly normal. So I tended to wear the quickie T-shirt turbans for class, and something a little fancier for the evening activities. Here's some pics (taken by Joani, Sue Peel, and Lamis, respectively; last photo added 11/26/09):
So, I returned from Camp Sunday evening. Monday I had time to recover and prepare for Tuesday, when I had another PET/CaT scan. They'd upgraded their technology since my previous visit; they now have PET and CaT together in a single newer machine. That was very cool, because the whole process took much less time, and the machine was much quieter than the older CaT scanner. Plus, I understand the combined machine prduces better results because the PET and CaT data are better aligned.
After the scan, I had to go to the oncologist's office for blood tests, but another nice thing is that they actually drew the blood at the PET place (since they had to stick me for their IV thing anyway), and I delivered it to the oncologist's for the testing, and that way I didn't need to get stuck twice in the same day.
Anyway, presumably I'll find out the results when I see the doctor tomorrow.
Oh, and I heard from Susue about her caregiver appreciation gift:
Hey Sister!.....I just got a nice package in the mail from Ovations (Ovarian Cancer Research) that you requested for me!!! It is a small WillowTree Figurine of a child holding a wire balloon with the word HOPE on it and a nice card!!! Thank you so much for your thoughtfulness.......i sure hope these tests go well for you and that the last Chemo is THE LAST!!
November 7, 2009-Chemo 3 and more
This last week has been a week of gifts and good things.
Not necessarily in order:
I'm getting ready to head off on another dance break. When I return, I have another PET/CT scan, then another consultation with Dr. Recio to plan the next step.
October 30, 2009
Well, last Friday
I decided to go ahead and shave off the remaining hair
on my head. That took quite a while; I guess there was
more left than I thought.
At first the effect was kind of startling, and I wondered
whether I'd made the right decision.
But now that I've had time to get used to it, I'm happy I did it.
The thin hair was pretty sad-looking, and it kinda made me
sad to look at it.
But seeing myself bald, while a bit weird, doesn't make me feel sad.
I think I have a pretty nice-shaped head.
It would be cool to be someone like Captain Picard
(ref: Star Trek: The Next Generation)
This past week I actually got out a couple of times for social occasions, the first I've gone out since the chemo started (other than for just, like, grocery shopping). I'm getting pretty used to getting myself "done up" to go out.
On Saturday I went down to a bellydance show in Miami. I went with my troupemate Pari, who was driving down for the daytime workshop and the evening show; I knew I wouldn't be able to do the workshop so I just hung out during that time. Overall, I had a good time. For this event, I didn't think I'd want to wear a wig all day long, so I decided it was appropriate to go with an Islamic look (left, photo by Lamis).
On Tuesday, I went to a Halloween party at a restaurant in Ft. Lauderdale, put on by the Broward Bellydance Meetup group. My troupe had been talking about possibly going to this, with Joani coming up with the idea of going as jellyfish and kinda-dancing to the Jimmy Buffet song, Mental Floss, which is sort of about jellyfish. She had an idea for how to do the costume so that it would work for me even if I'd lost my hair. So Joani and I went, along with two of her friends, and guess what? We won the costume contest! (Photo right: that's me on the left holding the trophy; Joani's the yellow jelly in the back, and the light blue jelly on the right is Cynthia, her daughter-in-law.)
October 23, 2009
As expected after the last round, I'm on the upswing now...
the aches and pains are diminishing, and the energy is increasing
Checking back on my side effects after round 1, I realize this round was definitely easier than the first. I didn't have the gum bleeding this time, probably because I've already adjusted my tooth-brushing regimen to try to avoid that. And I haven't really had a problem with constipation or diarrhea this time, probably because I'm being more cautious and gentler with myself.
The hair loss is the big change now. And although I know it's really just a cosmetic, and temporary, thing, it's still kinda depressing. That's probably mainly because it's such an obvious reminder of the disease. But it's also true that I always liked my hair, and I always thought it helped me look attractive, and don't we all like to think we look attractive? The ACS is totally right that looking good can help you feel better; in the past couple of days I've used their makeup/tips and wigs a couple of times to prepare myself to go out in public (grocery shopping, lunch, etc.) and it has really perked me up (example at right--I went like this for my last blood test, and the chemo nurse said I looked 10 years younger!)
Meanwhile, the real hair is still getting thinner, but it's not quite gone yet. I've been thinking the last couple of days about whether I should just go ahead and shave it off.
On the one hand, there's a part of me that kinda likes the idea that I still have hair. Plus, it's kind of interesting (in a morbid sort of way, I guess) to observe the process. Like, I'm surprised that it's been 2 weeks since it first started coming out and there's still some left. I've noticed hair on other parts of my body thinning out too; for example, I haven't shaved my legs in a couple of weeks, and while they're not totally smooth, they're not furry either. I've even noticed my eyelashes thinning, although at LGFB they told us the eyelashes won't totally fall out. However, I have not yet noticed any particular change in my eyebrows. (A while back I was tempted to buy a T-shirt that said "Chemo ate my eyebrows!" because it made me laugh, but I decided against it because I figured I wouldn't get much use out of it... although it did occur to me later that I could probably just append "They got better," or similar, and it would continue to be valid.)
On the other hand, I'm having to deal with the shed hair (it's worse than the cats'!) Mainly, though, I think it boils down to what I see in the mirrors inside the house. Would I look better or worse if I were bald compared to the little bit of hair I have remaining?
October 20, 2009
The most bothersome side effect, for me, is the
foot and leg pain (most likely bone pain from the
Neulasta and peripheral neuropathy from the chemo).
Tylenol helps, as does resting the legs,
but walking around or putting weight
on the legs makes it worse...
I'm trying to make the best of it by catching up
on my reading, but in general I'd prefer to be moving around more
instead of sitting so much.
Judging from the last round, though, this should start
getting better real soon now.
As mentioned, yesterday morning I went to the Boca office of the American Cancer Society to get a wig. This is one of the nice local services they offer, not just information but free donated items such as wigs for cancer patients. The people there were nice and friendly, helped me try several wigs on, gave me some useful advice. It was reassuring to see I could actually look kinda normal again. I chose 2 wigs that were just a little different from my normal hair, so maybe I can have fun with them even after I get my hair back.
October 17, 2009
Not feeling so good as yesterday--a little achy (probably the Neulasta),
not as much energy. But not too bad, overall.
I think I'm doing better with this chemo than the first one;
but maybe it's just because I know better what to expect now.
Meanwhile, my hair continues to get thinner and thinner. I think I'm starting to get a family resemblance to my cousin Peter (right :-)
October 16, 2009
The little green pills I'm taking had me feeling pretty peppy today,
so I was trying to get a lot of things done (because I'm expecting
to lose that energy tomorrow :-) Laundry, housework, phone calls, etc.
I did make an appointment to get a wig from the
American Cancer Society in Boca on Monday morning.
Medically, the main item on the agenda was to get my Neulasta shot, which was no biggie. But before that, I dropped by a drugstore to pick up some things and a couple of the folks there complimented me on the hat I was wearing. It was a cowboy hat that I haven't worn in quite a while, but maybe I should wear it more often, even after I'm past all these bad hair days.
October 15, 2009-Chemo 2
The major activity today was my 2nd chemo session, which of course
takes up most of the day. It went quite smoothly... they
adjusted the drug flow so I had no weird reactions this time.
The closest thing to a glitch was that I didn't sleep at all well
last night, but that's a common side effect for one of the pre-chemo
drugs I was taking (little green pill, dexamethasone).
It made me feel very nice that I got a number of emails and phone
calls from friends and family wishing me well on this chemo.
Probably my favorite was from my mom, who wrote:
Just want you to know that I was thinking how beautiful you were (I thought so, anyway) as a bald baby. [photo right] Your father and I believe you to be beautiful, baby, no matter how much hair you have - or don't have.
Yeah, the hair is still continuing to fall out and is pretty sickly-looking now. (People had been telling my it looked "cute" when I cut it short... I think even that term is gone... unless maybe I can form it into the style shown in the other baby picture, right bottom :-) Starting Monday, I decided to wear a hat when I went out in public. That hid the hairline, which seemed to the part where the thinness was showing the most. The hair sticking out from under the hat, while thin, didn't seem to look too bad.
Today I decided it had gotten so thin that I needed more coverage, so I wore a quickie T-shirt turban (a tip we learned at the Look Good... Feel Better session on Monday). I have some nice scarves for turbans (I've been inventorying them to see what I have around my various collections that might be useful), but for chemo I decided to go casual. Along the same lines, I decided it was a good day to wear my "When will the fun ever stop?" T-shirt (ref: Mythbusters).
I also went and inventoried the wigs I already have (several years ago I found some inexpensive ones in a catalog and bought a few... mostly for fun, but also to try and figure out what color my hair was... I'm "light brown"). Got a couple that look pretty decent, and a couple that look pretty dorky.
So now we're 2 chemos down, 1 to go. I'm now going to reward myself by finishing off the last part of the seasonal special Pumpkin Cheescake from The Cheesecake Factory that I got a couple days ago.
October 12, 2009
Getting thinner every day.... not me, my hair!
And when you're talking about hair, thinner is not better.
My mom suggested that maybe my forgetfulness wasn't chemo brain
at all, but rather a hereditary condition.
Now my hairline is looking like it takes after my dad too!
This morning I went to a Look Good... Feel Better session. There were about 7 other women there as participants, along with the facilitator and some other helpers. We each got a nice bag of makeup, which we got to practice putting on, which was a bit hard because the mirrors we had were not magnifying mirrors :-) It was fun, and we also got tips on wearing scarves, caring for wigs, etc. We didn't actually try on any wigs there, though; the local American Cancer Society does give away wigs, but that's done elsewhere. I'll try to remember to look into that.
I did spend a little time experimenting with making a turban when I got home, too.
In the afternoon I had my "pre-chemo" appointment, where they confirm I'm ready for the next round. My blood counts are almost back to normal levels, and I'm feeling ready, so we're "on" for this Thursday.
While at the doc's, I noticed a display that said something about "Happy Feet" and asked about it. Apparently this is a program offered by Ovations to provide nifty shoes to ovarian cancer patients. I'm going to be looking into that too.
October 9, 2009
It's started... the hair loss, that is.
This morning as I was washing my hair, I had way more than
the normal amount of hair coming out in my fingers.
It doesn't show yet, but I wonder how much longer it
will be before it does.
I decided it was a good day to wear my
"Don't Panic" T-shirt
The Hitchhiker's Guide to the Galaxy).
So it looks like good timing that I'm scheduled to attend a Look Good... Feel Better session on Monday morning. Susue recommended this to me. It's a free service, amd they provide tips on things like wigs and makeup specifically tailored for cancer patients, along with a goodie bag. Should be interesting.
I've been receiving goodies from friends and family as well. I've gotten emails and cards; just knowing I have all that support out there is helpful. It's all good. I've also gotten a couple of "care packages". For example, among other things, Susue sent me Melissa Etheridge's Greatest Hits CD, which she said really helped her through her treatment. And my mom sent me, among other things, mushroom powder from a Hen-of-the-Woods (Maitake), which is supposed to have numerous health benefits, including anti-cancer. Plus, it's also known as "Dancing Mushroom," so it must be good :-) And here's an interesting link she sent that tells more about this mushroom: Stalking the Hen of the Woods.
Meanwhile, I continue to feel better each day (as promised). Here's some specific medical updates since my last entry here:
October 5, 2009
I continue to enjoy these days of feeling good.
Although I still don't have an enormous amount of energy,
I've been able to get out and do small-scale things, like
nature walks or having pizza.
I'm beginning to wonder if I'm getting "chemo brain." In case you haven't heard of this, it's a kind of mental "cloudiness" that affects memory, concentration, etc. Although I don't really feel "cloudy," I have had a couple of occasions where I'm talking to someone and get kinda lost in mid-sentence and it takes me a long time to get back to what I was in the middle of. Anyway, I kinda like the idea--it's a better excuse for it than old age!
Oh, and here's an interesting link that a friend sent me, to a page on the Anerican Cancer Society web site: Dance Therapy.
October 3, 2009
I was lying awake in bed in the pre-dawn hours this morning,
thinking about how I was lying awake in bed.
This has happened almost every day since the chemo--I wake up
in the middle of the night to pee (this part is normal), but
then I can't get back to sleep... my brain turns on and starts
thinking about stuff.
I'm wondering if this is related to the chemo, or just because
I have a lot of stuff to think about these days.
And that got me thinking about changes in the normal daily routine. Like, having short hair is interesting... it washes and rinses so quickly, and with so little product. And I don't need to be careful about where I put it when I go to bed to make sure I don't end up pulling it by laying on top of it. It seems to be getting dirty faster than when it was long, perhaps simply because there's less surface to spread the oils over. It used to need washing only every other day, but now I'm thinking I'll need to do that daily.
And then there's the poop monitoring...
Of course, some of these things will change back after the chemo is over. But there are other things I'm not so sure about.
For example, I've had several times since the chemo where I felt just a little warm when the A/C was off-cycle, even though the temperature settings are the same as they've always been. Is this just a random fluctuation in the air handling? Is it something related to the chemo? Or is it perhaps something like hot flashes, from the "instant menopause" brought on by the removal of my ovaries? So far, I've felt comfortable again as soon as the A/C cycled back on, so the questions remain.
October 2, 2009
Yesterday was a Very Good Day.
I had enough energy to go take a nature walk
(at Delray Oaks--it's mostly shady, which is important
considering they told me to stay out of the sun;
plus it's fairly short).
I've noticed fresh air does wonders for making one feel better,
at any time.
Since the chemo, all I'd really been able to do for that
was sit on my back porch swing and watch the clouds go by.
Which helps, but it was so much better to get out into the woods.
Then I had to get my blood checked at the oncologist's office. The nurse confirmed that the side effects should continue to diminish and I should continue to feel better and better (until the next chemo, of course, but that's 2 weeks away). My blood results were very good, too, so I left there feeling really happy.
Then I went out to lunch at Duffy's. They have a really good tuna steak there that I was looking forward to--the first time I've actually looked forward to food since the chemo. And it was excellent (as usual). Of course, I ended up eating more at one sitting than I had any other time in the last week, and I was a bit overstuffed, but it was good.
October 1, 2009
Susue called on Tuesday. She must have been reading my mind,
because the call came at a perfect time.
I'd been getting pretty discouraged because
I was still not feeling well.
The progress I was making was minimal, and
I was getting more aches and pains.
I was wondering
if I was going to continue to feel bad the whole time.
But Susue wanted to advise me that that was probably the "turning-the-corner" day, and that I should start feeling better the next day. Just knowing that helped a lot, and it also turned out to be true! On Wednesday, I could definitely sense the improvement. Although I'm still a bit weak and achy, I now feel I'm on the upswing, which is great.
Also on Wednesday I had my followup visit with the gynecologist for the original surgery. That went fine-my scar is healing great, and they were very interested in how my treatment was going, which was nice to know.
And Wed. evening I had my first dance practice since the chemo started. It was slow going, but it felt good to get my body moving around.
September 28, 2009-Days after Chemo 1
I talked to Susue--apparently she had a reaction to the
Taxol also. We are apparently very much alike.
I cut my hair! I'd been thinking about this, and had decided that before chemo took it and made it all ratty, I'd chop most of it off and send it to Locks of Love. I didn't see the sense in paying for a professional cut for something that might last 2 weeks, so I just followed their directions (make a braid and cut it off), then evened it out a bit, and I don't think it looks too bad. Now presumably I'll look a little less ratty as it starts coming off...
Summary of days so far:
Summary of side effects so far:
September 24, 2009-Chemo 1
There was only one other patient in the chemo room when I got there,
and she left fairly soon, leaving me the only other person there,
except for the occasional person coming in for blood tests.
Paula advised me this was the exception rather than the rule,
but it did give me control of the TV remote :-)
So, I had some paperwork to sign, Paula inserted the IV with no major issue, and we got the first IV started (with some prep drugs). After a while, she started the Taxol... and I had a strange reaction to it. I felt kinda icky, and she said my face was flushed. Apparently my blood oxygen levels had dropped (if I recall correctly). She called in Dr. Recio, and they decided to shut down the Taxol for a bit while my oxygen got back up to more normal. They said they'd only seen this kind of reaction once before. They watched me very carefully before starting it up more slowly... then I tolerated it better. Personally, I think my body was saying, "OH MY GOD, THIS IS POISON!" and trying to argue with it.
At some point I fell off to sleep and woke up a couple hours later. There was really nothing on the TV, so I listened to my iPod a bit. Paula started the second drip (with the Carboplatin) slowly as well, and I had no problem there.
I was feeling pretty OK when I left.
September 22, 2009-Chemo Plan
So, I met with Paula, the chemo nurse, to discuss the plan.
She was very nice,
gave her whole educational spiel, gave me a bunch of
Chemo will take about 5 hours; they'll give me stuff
that will make me sleepy so I cannot plan to drive myself home;
I should bring lunch and books or whatever to while away the time.
The day after chemo I'll come in for a shot of Neulasta
(raise white blood cell counts), and then once per week after that
for blood tests to confirm I'm recovering OK until I'm ready for
the next round.
Discussed all the side effects; diarrhea and constipation
are both likely, apparently, so I need to monitor my pooping now.
A couple of folks at Camp had advised that I should get a "port"
for getting the chemo, and I kinda asked about that, but
was assured that arm stick should be OK.
I infer the extra surgery for the port is a concern,
especially since I'm only doing 3 rounds; maybe
I'll ask about it in more detail if I remember.
I got some prescriptions to fill (mostly anti-nausea drugs)
and a schedule for taking them.
First chemo session scheduled for Thursday.
September 12-20, 2009-Dance Break
For some time,
I had been planning to attend a dance event over the weekend of September 12,
and was also planning to go to Oasis Dance Camp in Traverse City, MI,
September 15-20. Fortunately I was still able
to participate in both events, albeit at a somewhat reduced
activity level because of last month's surgery.
I did tell everyone about the chemo when I introduced myself at Camp, and it was really nice to know I have love and support from everyone there too. But it was especially nice to just take a break from having to worry about it all for a little while.
September 10, 2009-Oncologist
This appointment was basically to review the treatment plan, which
was not affected by
the colonoscopy results.
Still 3 chemo sessions as originally stated.
I did ask about the staging of the cancer, and
Dr. Recio said it was stage 1A (along with grade 2, mucinous).
Met the chemo nurse, visited the chemo room, and set up a follwup appointment to actually plan and schedule the chemo... Tuesday the 22nd, after I return from dance camp!
(following added 10/5/09) She also showed me a lovely little silver pin (at right) that she said I'd get for being an ovarian cancer survivor. I asked what I needed to do to qualify (thinking it would be a reward for finishing chemo, or something) and she said I get it now, because I'm going to survive!
September 08, 2009-Endoscopy/Colonoscopy
So I got a rush appointment with Dr. Abitbol On Sept. 4.
Of note is that he said the PET scan showed the cancer hadn't invaded
the pancreas, which was good.
He also said he didn't think it was likely that it was in the GI tract
either, but of course it was important to check.
Otherwise, the appointment was just about getting it set up.
So my Labor Day was mostly spend prepping for the colonoscopy. You know, I don't think it was overall as bad as I remembered it from 15+ years ago. The drink wasn't as disgusting, and I managed to keep it down except for the very last glass. I didn't have to sit on the toilet all night, so I actually managed to get some sleep.
So in the morning, I went to the Ambulatory Care Center in Boca, and of course remember nothing about the actual procedure because I was asleep for it all. When I woke up (well before noon--I don't remember it taking such a short time before), they told me everything looked good, and even gave me color printouts with pictures from the procedures, like the pics at right from the endoscopy. (pics added 10/5/09)
September 03, 2009-Oncologist
Dr. Recio was running much closer to schedule this day.
He said the PET scan showed nothing notable, but...
the pathology that came back from Mass. General
(from the guy who "wrote the book on ovarian cancer") showed
the cancer was grade 2 (not 1) and "mucinous".
Most ovarian cancers are "serous", which means the cells
look like fallopian tube cells; "mucinous" means the cells
look like GI tract cells... which means we need to rule out
that the cancer was coming from there.
So, I need to have a colonoscopy/endoscopy (just as well,
my regular doctor was advising me to have a colonoscopy
for general wellness reasons anyway).
I had no preference for a doctor to do this, so he called
up Dr. Abitbol, the guy "he trusts his heinie to", who agreed
to rush me in asap; i.e. this coming Tuesday (Monday is Labor Day).
So I needed to set up an appt. with him the next day.
And because the cancer is grade 2, I'll now need chemo: 3 sessions, 3 weeks apart, with Taxol and Carboplatin. I can expect to lose my hair, but shouldn't be too sick. Next appt. in 1 week.
August 26, 2009-PET/CaT Scan
I'd received some info on PET scans when they made my appt., and there's also info on the Web about them. They're apparently often used to stage cancer. I had to be there early in the morning. As advised, it was a long, slow, boring process. First I had to get stuck with an IV-type thing so they could inject stuff into me as needed... then I needed to sit quietly and drink some goo for a while. Then they laid me down in the PET machine, which doesn't fully enclose you so it's not claustrophobic or anything, but then you have to lay still for like 40 minutes while it chunks along.
Then I had to go for the CaT part of the scan, which was much quicker, although the machine was louder. I'll hear the results from the oncologist next week.
August 20, 2009-Oncologist
The office was running very slow on our first visit, but once we got to talk to Dr. Recio, he was very friendly and informative. I later did some Internet research to make sure I was using the proper terminology... What I found is as follows:
When they find cancer in you, the first couple of things they do is "grade" and "stage" the cancer. "Grade" refers to whether the cells are the kind that are likely to spead slowly or quickly; exactly how this is done depends on the type of cancer, but for ovarian it's grade 1, 2, or 3 ("well-differentiated", i.e. only likely to spread slowly, to "poorly differentiated", i.e. much more likely to spread quickly). "Stage" refers to how much the cancer has already spread in your body, usually I-IV (a little to a lot). Prognosis and treatment depend on both things.
When they go after ovarian cancer, they also need to look at the uterus, nearby lymph nodes, and other nearby tissue to check to see if the cancer has spread. Because my surgery was just for cysts and not cancer per se, I will need another surgery to check those things... But that won't be until after my current surgery is healed, like 6 weeks, and it should be able to be done laparoscopically.
The pathology showed the cancer to be grade 1 (well-differentiated), which means (assuming they don't find more in the surrounding organs), I won't need to have chemo or any additional treatment. However, this is still pending the second opinion from Mass. General, which hasn't been received yet.
I was scheduled for a PET scan at DCA in Boynton on 8/26; followup with Dr. Recio in 2 weeks (9/3).
In the evening, I was checking my Facebook info, and I found out my old dance friend Susue is a 3-year survivor of ovarian cancer (and that September is National Ovarian Cancer Awareness Month, and that their color is teal (like they use pink for breast cancer)). Naturally, Susue has become an important part of my support.
And of course I shared all this info with my troupemates, and they too have offered their support. It's good to know I have such wonderful friends.
August 19, 2009-Staple Removal
Back to the gynecologist's office for the staple removal. Everything's looking good. The doc said that if rest of my treatment went as well as the healing from the surgery, I'd be in great shape. Followup appointment scheduled for 9/30.
August 14, 2009-Pathology
So, after retuning home from the surgery, I made my appointment to get the staples removed for next Wed. Later that day I got a call from the doctor about the pathology. I called back (it was apparently a direct line--he answered it himself--I was impressed). They found cancer; but it was only in the one ovary, small and apparently well-differentiated, all very good signs. I should, however, expect to need chemo and additional surgery. They'd made an appointment for me with Dr. Recio (gynecologic oncologist) in Boca for next Thursday... Dr. Recio had asked for a 2nd opinion on the pathology from Massachusetts General.
At first, the idea of a phone call to tell me I had cancer seemed a bit impersonal, but on further reflection I decided it made sense to get the info as soon as possible.
August 13, 2009-Surgery
After returning from Canada, I called about the surgery and it looked like it was going to be early September. Then first thing this Tuesday morning, I get a call from the doctor's office; they'd had a cancellation and wanted me to have the surgery right away; i.e. the very next day, at West Boca Medical Center. So I was doing pre-op stuff pretty much all day on Tues., and went in on Wed. to get it done. The only other time I'd ever been in a hospital before was for a colonoscopy, some 15 years or so ago, so this was all new and scary to me. The original plan was for the surgery to be done laparoscopically, if possible. That would mean I could go home same day. But the morning of the surgery, the doctor came by and said he thought the cyst was too large for that and he preferred to do it by cutting. So that was the new plan.
Obviously I don't remember anything else until I woke up in the recovery room. At some point I had to throw up--good thing they showed me where to aim, because I'd have to do this again :-) I assume this was from the anesthesia, because I hadn't had anything to eat since the night before. I think they gave me some anti-nausea med, and I got some morphine for pain. The doc came by, said the surgery was very successful, but the right ovary looked "bad" and the stuff was sent to pathology (which I assume is standard procedure in any case). And, I needed to stay overnight. That was not a fun thing at all. They fed me dinner, but I couldn't keep it down, so they needed to keep the IV in me. They gave me an anti-nausea shot in my butt. I tried to go out and walk around, as directed, but got tired pretty easily. And I think I woke up every hour during the night for one reason or another...
The next morning, the nurse came around and asked if I'd had a bowel movement, and I had to remind her that I hadn't had any solid food to stay down. Then she asked if I'd passed gas, and I said "I don't know." She said "Did you fart?" and I said "I know what pass gas means, I just haven't been paying attention." She said "Well, I can't tell if you're doing it; you have to tell me." And I said, "Well, I didn't know I was supposed to be monitoring my farts!" I mean, when I go to the bathroom, I usually just release what needs to be released, you know, and then forget about it. I don't generally inventory what comes out. So the moral of the story here is, when you're in the hospital, you should pay attention to those things.
I was feeling better, food was staying down better, and eventually the doc came by and said I could go home, and that I should make an appointment to get my staples out the following week.
A couple years ago I was having a routine gynecological exam and the doc said he wanted me to have an ultrasound. I wasn't having any symptoms or anything, so I figured this was just one of those standard wellness things they do when you reach a certain age, like get a bone-density test.
Well, the ultrasound found I had a cyst on my right ovary (so I now infer the doc requested the test because he felt something awry, not because it was a standard thing). This cyst was about 5cm, a borderline size--any larger, they prefer you have it removed; any smaller, they generally feel it's OK to just watch it. (Cysts are kind of normal, not necessarily a problem.) I wasn't enthusiatic about the idea of surgery.
So, I had blood tests for CA125 (cancer indicators) which came up negative... and we kept watching the cyst via ultrasound every 3-6 months to see if it was changing. Not much happened, maybe it shrank a little, and the doctor said the form wasn't consistent with cancer.
Until my ultrasound in July 2009, just before my trip to Canada, when they discovered it had grown a fair amount, and I should have surgery to remove the cyst (and, at my age, they prefer to remove the ovaries along with them). I was to call to schedule the surgery when I returned from my trip.