Health Blog

(by Sherry)

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. Newer stuff is toward the top. March 15, 2010 March 11, 2010 February 25, 2010 January 29, 2010 January 23, 2010 January 6, 2010 December 28, 2009 December 24, 2009 December 18, 2009 December 13, 2009 December 09, 2009 November 26, 2009 (note: another entry below was also updated this day, as indicated) November 20, 2009 November 18, 2009 (updated 11/26/09) November 7, 2009-Chemo 3 and more October 30, 2009 October 23, 2009 October 20, 2009 October 17, 2009 October 16, 2009 October 15, 2009-Chemo 2 October 12, 2009 October 9, 2009 October 5, 2009 (note that some of the below entries were also updated this day, as indicated) October 3, 2009 October 2, 2009 October 1, 2009 (Below entries were part of initial posting, 9/28/09.) September 28, 2009-Days after Chemo 1 September 24, 2009-Chemo 1 September 22, 2009-Chemo Plan September 12-20, 2009-Dance Break September 10, 2009-Oncologist (updated 10/5/09) September 8, 2009-Endoscopy/Colonoscopy (updated 10/5/09) September 3, 2009-Oncologist August 26, 2009-PET/CT Scan August 20, 2009-Oncologist August 19, 2009-Staple Removal August 14, 2009-Pathology August 13, 2009-Surgery Background

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 directly. American Cancer Society. Look Good... Feel Better National Ovarian Cancer Coalition Ovations for the Cure Also, you can support me directly if you support beledy.net.

March 15, 2010

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 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

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:

• Team page: http://main.acsevents.org/goto/Anti-Cancer.BellyDancers
• Personal page: http://main.acsevents.org/goto/Sherry.Reardon

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

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

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

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

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:

• Head hair: Definitely growing. It feels fuzzy, but I'd say it's not quite enough to look like I have a crew cut. It is dark enough that you can tell where the hairline is. I think it might actually be darker than my pre-chemo hair. They say the new hair often comes in a different color and/or texture; most people say the new hair will be curly, but it's too short for me to tell that yet.
• Eyelashes: Also growing in pretty well. Pretty much all of the few remaining lashes that were normal length have fallen out, but the new lashes are coming in pretty evenly. So even though they're still too short to look much like lashes, at least they make a dark line along the edge of my lids. As little as that is, it looks a lot more normal than it did before. I was down to like, 2 eyelashes on each lid before they started growing back.
• Eyebrows: Not doing as well. Both the eyebrows and eyelashes continued to fall out long after the last chemo. (In fact, they're still falling out.) I suspect this is just they're finishing out their normal lifespan. I would assume I wouldn't notice it with my head hairs because a) they have a much longer lifespan, and b) there's so many more of them, it's harder to notice the loss of one. The eyebrows seemed to take longer to fall out, and now they're taking longer to come back as well. But more annoying, they're not coming back evenly--they're coming in pretty well on the inside ends, but very little towards the outside. It's weird. Oh well, they'll still probably be looking normal before my head hair does.

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):

What can I say, it was a hospital visit.

• Somewhat fun: in pre-op, Dr. Recio asked if I was ready, and I said, "I reckon", and the OR nurse there said "Then let's mosey." (Both she and I were somewhat amused by the use of words like "mosey" and "reckon" :-) Overall, most of the people seemed to laugh more readily than they did when I was registering on Friday.
• Definitely not fun: When I woke up in recovery, they told me I had a catheter. Besides feeling vaguely uncomfortable, that also limited my ability to move, which made me a lot more uncomfortable. I was very happy when they removed it the morning after the surgery (Tuesday). I didn't think the removal process felt too bad; honestly, most of the needle sticks were worse. But the nurse told me I must have a high threshold for pain.

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

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

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

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

But that's it for now... medically, I don't have anything else going on until then.

November 18, 2009

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!!

• My mom decided she wanted to come down and visit. I was able to pick her up at the airport Monday and drop her off on Saturday. She was able to drive me back and forth to chemo on Thursday. In between we were able to do some fun stuff. For example, we went out for some really good lunches, twice at Duffy's, and once at Old Key Lime House (right). We also went out on a few nature walks, and mom even found some mushrooms, so she was happy.
  
• I had my last chemo on Thursday! All went well.
• I got my fancy sparkly shoes from the Happy Feet program of Ovations for the Cure. They're cute, they fit, and yes, they make me feel happy. They notified me via email when they were shipped, and at that time also offered to send a "Caregiver Appreciation Gift" to a special person who has helped me through my journey. I'm not sure what the gift is, but I told them the person I would want to acknowledge was my friend Susue. I assume she'll tell me about it when she gets it :-)
• Meanwhile, Susue sent me another gift, a "funky necklace" she'd made to help me feel better (pictured in part at right). It's really amazing, with all kinds of nifty and inspirational beads and charms on it, including a photo of the two of us, and one that says "I hope you dance".
  
• I received a lovely flower arrangement from my aunts in Canada. It's really beautiful, with some interesting flowers in pretty colors. I picture it below:

  

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

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

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

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

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

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

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

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

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:

• Monday (10/5): Had an appointment with my regular doctor; this was a regular appointment made 6 months ago, long before any of this started. I had decided not to get the blood tests prior to the appointment like they'd asked, figuring the chemo would have them out of whack anyway, and I didn't want to get stuck again if it wasn't going to be helpful. That turned out to be the right decision; we basically just rescheduled for 4 months from now. But I did sign the papers so they could get my records from all the pre-surgery tests.
• Tuesday (10/6): I knew there was something supposed to happen re: my health insurance at the end of this month, but I hadn't heard anything about it, so I decided to call. They were unable to specifically clarify the change, but they at least were able to confirm I will still have insurance, and they're supposed to get back to me by next week with the other info.
• Wednesday (10/7): Had a followup appt. with Dr. Abitbol about the colonoscopy. The new news was good news: the biopsies taken were all negative. I did ask about why he'd said I should do it again in 5 years, rather than the normal 10, and he explained it was because of the ovarian cancer--we need to watch the area more closely. Oh well... if there's one thing I've learned from this so far, it's that it's probably good to be watching things closely.
• Thursday (10/8): Another blood check at the oncologist. My platelets were a bit low, but not really low enough to be concerned. I just need to continue to be careful not to hurt myself. Which is probably a good idea all the time :-)

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

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

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

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 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:

• Day 1 after chemo (Fri.): felt pretty good, actually ran some errands, no major issues.
• Day 2: feeling more lethargic, not doing much.
• Day 3: still not feeling like doing much.
• Day 4 (today): A little better than yesterday; I needed to run some more errands, and it actually felt good to get out of the house to do them.

Summary of side effects so far:

• Gums bleeding when I brush. Made sure I was using a soft toothbrush, as advised... Rinse with baking soda, also as advised... seems OK.
• A couple of very minor hints of nausea, possibly nothing... but taking the pills prescribed for that.
• Constipation vs. diarrhea... probably overcompensating for one causing the other...
• Some pain (probably from the Neulasta)... taking Tylenol, as advised.
• Some balance issues, and tingling in the feet.

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

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!

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

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.

Background

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.

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