My ride on the Hodgkins bus...

fertility

2011-03-07T13:20:00.000-08:00

One of the issues facing young cancer patients that is just starting to get a bit of attention is fertility. Cancer treatments are designed to kill cancer ... and whatever else needs to be killed in order to kill cancer. It's been my experience and my opinion via conversations with others that the field of oncology isn't especially interested in anything that isn't cancer. Unfortunately, that means a lot of side effects are blown off, including but not limited to fertility.

Before I began treatments for my lymphoma, I was told that one of the possible side effects of the chemo was early menopause: my periods would stop during treatment and they might or might not start again.

I only missed one period.

Since chemo, however, I have had a bunch of other odd hormonal side effects that are annoying and slightly disconcerting but probably not life-threatening. No one can tell me why they're happening or if they're a problem (oncologist, primary care doc, ob-gyn), so I've never really been sure if all of the plumbing is working properly or not.

We have confirmation that all systems are in order — I am pregnant!

I have seen two docs so far —one at a birthing center and one in a regular office — and neither was of the opinion that my cancer history is a problem. I suspect that it being in a different part of my body is a big deal, and being in remission for over three years probably helps, too.

So I'm officially on my next wacky body journey, but this time cultivating the growth instead of trying to get rid of it. We'll see how it goes!

results continue to be good

2011-01-09T10:08:00.000-08:00

I had another check-up with my oncologist yesterday.

At this point, I have bloodwork and a chest x-ray before each visit. As has been the norm, they were both fine.

He said that the first two years were when it was most likely to recur, and I'm way past that (it was three years in November). "Every day that you go without cancer makes it less likely that it will come back."

Another day down!

Five years is considered "cured." I'm more than half-way there!

He also commended me for being composed throughout treatment and thanked me for not calling him on a regular basis. (I'm pretty sure I never called at all...) Kinda makes me wonder what other folks are like.

Anyway, it was a short, easy visit, as they have turned out to be. And my checkups have been moved to every six months. Hooray!

Hopefully that means there won't be any new posts here until June...

Second Chance

2010-10-06T11:11:00.000-07:00

I just scanned through my posts and can't believe I haven't posted here...

Back in June, I opened my own fitness center! For anyone who's been following all along (or long enough), you know that keeping my body moving is a priority. You know that I exercised whenever I could through treatment. You know that my oncologist attributed my good health to my relative ease of side effects through treatment. You know that since the active cancer experience ended, I've completed three triathlons.

You might not know that years ago, before cancer was part of my daily living, I was quite heavy. I changed how I ate, I started exercising, I lost weight, I felt (feel) great. Baby steps. No fad diet. No hours upon hours on a treadmill. Lifestyle changes. Pieces I could handle when I could handle them.

You might know that I am a teacher. I teach elementary band for a living, but really, in my essence, I am A Teacher. I can't imagine a career that had no teaching component in it, regardless of the content.

Put this all together, and you have Second Chance FitCenter. I converted a room in my house into a studio. I want to help people who want to make changes to their lives, whether it's because they want to lose weight, they want to reclaim their bodies during or after cancer, or they just want to be in better shape (to whatever that means to them). I'm not your go-to gal if you want to shave half an hour off your marathon time.

Sound interesting? Take a look at my website: www.secondchancefit.com. You'll find my story, my services, my philosophy, testimonials from those who have been working out with me since April (I've been certified that long and took on a few "practice clients" before opening my doors to the public), links to reviews on Yelp and Merchant Circle, my contact info.

Check it out, pass it on.

I forgot!

2010-09-27T19:20:00.000-07:00

I had an appointment last week and forgot to post an update here...

X-rays are clean, blood work looks good. Next appointment is in four months.

In the mean time, I will cross over the three-year mark (November). Doc said that after my next appointment, I'll graduate to every six months. Hooray!

He also asked if he could refer patients to my training business (YES!). He said he knows me, he knows I've been through it and would be great for people who are looking. I hope he sends some folks over...

So not much to say except that I'm still clean and healthy :-)

progress in the sun

2010-07-20T09:38:00.000-07:00

Well, I'm finally seeing progress.

Sun sensitivity was a side effect of the chemo, and because my doc told me that melanoma is a common secondary cancer, I have been vigilant about taking precautions.

My first summer after chemo ('08), I would burn through sunscreen and clothes. It was a summer of staying in the house.

Last summer ('09), I'd burn through sunscreen or clothes, but if I wore both, I'd be OK.

This summer, I'm not burning, as long as I'm covered with one or the other! So last week, I went swimming in my backyard pool during the day for the first time in over three years! Glorious!

That's all the news from here :)

spreading the word: change

2010-06-28T13:18:00.000-07:00

My path has been interesting — sometimes easy, sometimes difficult, but it is the only path I know.

It has brought me to a place where I have not only an ability but an obligation to reach out to people, to tell them my story, to let them know that they are not stuck, that change is possible.

This blog is a little piece of that, but I want to make it bigger.

If you have an audience who is looking to hear a great story from a personable speaker that will help them to take the first steps to making the positive changes that they want to make in their lives, look no further!

If you are in the Phoenix metro area, I will speak to your group for no charge. If you are out of the area, I do request that transportation and accommodations be provided.

Please contact me: heather at secondchancefit dot com. You can look at my website at the same URL for more information about me.

still healthy ... and a hair cut

2010-05-29T11:26:00.000-07:00

A few noteworthy things have happened in the past week.

First, I had my 4-month checkup yesterday and everything looks good. I continue to receive only chest x-rays (no PET or CT scans) and will stay on that course unless something suspicious pops up.

I also had my yearly blood chemistry done, and everything looks good there as well.

Last weekend, I decided to buzz my head again for the summer. Having been there before, it was much less intimidating to do.

#2 all the way around :)

I am enjoying its ease of care, but there were two things I hadn't thought about ahead of time.

First, the first shower that I took after getting it cut, I got out of the shower and looked in the mirror and was surprised not to see a big ugly scar with stitches in my throat. That's where my biopsy was done, and the first time my hair looked like this, there was indeed a big ugly scar with stitches there. I was surprised that that's what my brain was expecting to see. It hasn't popped up since.

I have gotten a lot of compliments on the cut, and I am always amazed at how many women tell me they wish they could wear their hair like that. Um, you can! Go to the salon and ask for #2 all the way around, then pay them :) "My head is a funny shape." So is mine! If I run my hand over my head, there are bumps and valleys all over, but even a cut this short doesn't show them :)

Second, I had the aforementioned oncologist appointment yesterday. In the waiting room, it's not a cute or hot or chic haircut, it's a "I have cancer" haircut. Very interesting how simply walking through that door completely changed perception of the cut.

Here's to continued health and hair freedom!

the latest happenings

2010-04-22T17:38:00.000-07:00

Well, I haven't had much to say lately, which is a good thing!! Life has been moving on. (Don't get the impression that this happens on its own — I've been making a lot of that life happen!)

I have become a certified personal trainer and am starting my own side business in my home. I also have started up a blog about change, healthy changes, etc.

My blog, Change Is Possible, is here.

My website for Second Chance FitCenter (a work in progress, but OK for now) is here. I will be ready for appointments beginning some time in June.

Become a fan of Second Chance FitCenter on Facebook!

Check them out! If you like them, pass them along. My best friend right now is word of mouth!

the science behind chemo brain

2010-02-21T08:16:00.000-08:00

This article explains chemo brain biologically. Very readable. Very interesting.

another clean scan :)

2010-01-18T19:10:00.000-08:00

I had an appointment with the oncologist today, after a chest X-ray and blood work on Thursday. X-ray was clean, blood work looked good. My next appointment is in late May.

Today is two years since I finished radiation. So much has happened in those two years... It feels like much longer ago than that, but I've been a busy chica, and being busy certainly makes time pass more quickly.

This blog has become pretty not interesting, but I guess that's a good thing :)

In the last couple of weeks, I've had three more people comment that I have hair now. This is slightly annoying, since my hair started growing in before I even finished chemo, and that was over two years ago. Not a huge deal by any means, but come on now people. I've moved on. You can, too.

At school, they're participating in the Pennies for Patients drive, which supports people with blood cancers. I'm pretty sure this had nothing to do with me, that it's coincidence. But I told the counselor, who is organizing the whole thing, that if she wanted to let kids know that I had a blood cancer, so this might help people like me, she was welcome to, and that if anyone wanted to talk about it, I'm happy to answer questions. I had quite a few kids ask me questions, which was cool (some of them have been my students for long enough that they remember when I was out). I also had a few kids come in and put change in my box, which I thought was cool. They are competing with other homerooms, so change they give to me doesn't count towards their competition, which makes it that much sweeter for them to do.

I've given up the search for an answer or a cure for chemo boobs. I am dealing with my heart rate issue when I exercise in hopes that it will come down eventually. And I still wear sunscreen, though I don't know if I need to be as vigilant about it or not. No need to press my luck.

Otherwise, lots of good stuff going on professionally and blissfully little to report on the health front. I've been using my NetiPot almost every day when I get home from work, and I'm convinced that is the primary reason that I haven't been sick yet this season. There's still plenty of time, I know, but so far, so good...

happy new year!

2009-12-31T15:23:00.000-08:00

May 2010 bring good health, mental stability, and spiritual peace to all!

brief holiday musings

2009-12-25T07:55:00.000-08:00

I am constantly reminded how lucky I am.

It's Christmas — a holiday I don't really celebrate but my family does, so I do by proximity — and I am healthy. I'm working, I'm exercising, I'm doing pretty much whatever I want ... well, I'm not restricted by a tumor or white blood cell counts or anything of that nature, at least. We're not gathering this year in fear that it's my last. I'm not in a hospital.

For the people who are in one of those situations ... I would do something for you, but I don't have the first clue what that would be. If you have a suggestion (in general, for yourself, for someone you know), let me know. In person visits need to be local ;)

In the mean time, it's a day of celebration. If you celebrate and love Christmas and look forward to today all year — here it is! Merry Christmas! If you celebrate it and dread it, or if you don't celebrate it, it's a day of celebration — in another few hours, it'll finally be gone for another year ;)

2009-12-21T07:05:00.000-08:00

Since I decided to stop doing a post a day, I have gotten a bit lazy over here. Well, lazy on the blog.

Fortunately, there's not much going on on the cancer front.

I was given a neat pair of silver earrings in the shape of a ribbon for my two years cancer free anniversary. I wore them to work one day and was asked if they were breast cancer earrings.

ARGH!!! NO!!!!

Shit. Ribbons don't even necessarily signify cancer awareness, much less cancer awareness. The pink ribbon has got to go.

I am still in the process of becoming a Certified Personal Trainer. I have big dreams of opening a small studio in my house where I can help fellow survivors make their bodies strong. I will definitely post more when I have more to post.

In the mean time, just living life. Lots going on at/for work, lots going on with the CPT stuff. I've managed to keep myself healthy so far this school year which is nice (and is no easy task!).

Life is good :-)

new plan

2009-11-29T11:55:00.000-08:00

OK, so I realized that these posts were ... boring? When I came up with the blog-a-day idea, I had a lot in my head, and as soon as I sat down to type, it all dissipated. So I will save blogging for days when I have something to say or something to share :)

Year 3, Day 7

2009-11-28T18:05:00.000-08:00

I'm attempting to blog every day in my third year of remission with info, news, or on a person front, what's in my head, how I'm keeping my body healthy, etc.

One of the things I've gotten much better about is taking care of myself in small ways. I'm getting better at saying "no" which is a huge help. I'm better about going to bed early when I'm super-tired, even if that makes me a big dork. As I've come to be a healthier eater, I crave sweets much less frequently — close to never. I'm better about not letting other people's food issues influence me. For example, if I'm at a small social gathering and there are cookies and I don't want one, I won't eat one. Yes, that sounds simple enough, but have you ever declined a cookie in a group of cookie-eaters? You know what happens :)

Anyway, small things. Yesterday I slept in. Mid-afternoon, I was sleepy again, so I took a nap instead of arguing with myself that I shouldn't be sleepy since I slept in and staying up anyway.

Tonight, I am sleepy again. I am going to bed here shortly, even though it's barely 7:00.

(I'm not worried about all of this sleepiness right now: hubby's been sick and I'm sure I'm fighting his germs. Also have my period which often makes me sleepier.)

If there's anything you'd like me to write about, let me know and I'll see what I can do.

Year 3, Day 6

2009-11-27T20:44:00.000-08:00

I'm attempting to blog every day in my third year of remission with info, news, or on a person front, what's in my head, how I'm keeping my body healthy, etc.

If you're unfamiliar with them, I'm Too Young For This is a resource for young adults with cancer, and Voices of Survivors is a compilation of the voices of many and varied survivors on what it means to be a survivor.

Year 3, Day 5

2009-11-26T23:19:00.000-08:00

I'm attempting to blog every day in my third year of remission with info, news, or on a person front, what's in my head, how I'm keeping my body healthy, etc.

For Thanksgiving, I am thankful

• for good health
• for fun in-laws
• for self-control

My cancer was diagnosed in May. My treatment ended one week before Thanksgiving. It was a matter of sheer luck that I spent no major holidays in the hospital or in bed.

My treatment ended just over two years ago. That incites a bit of thoughtfulness in itself. Plus it's Thanksgiving, which also incites thoughtfulness.

So very many people helped to carry me to where I am right now.

Thank you to all. As if thank you is enough.

Year 3, Day 4

2009-11-25T22:29:00.000-08:00

I'm attempting to blog every day in my third year of remission with info, news, or on a person front, what's in my head, how I'm keeping my body healthy, etc.

It is harder to blog every day than I expected it to be. Some days I just don't have much to say.

So I will just say that today, on Thanksgiving Eve, I am grateful to be alive, to be healthy, to have good friends and family, to have a roof over my head and food in the fridge and a million other things that I have but don't deserve (any more than any of us deserve them).

While tomorrow will not be a day of great (read: healthy) eating, I will honor my body and not stuff it until it hurts. I'll have a little of everything (well, everything not meat), and it will be super-tasty

If nothing else, pounds go on way faster and easier than they come off, and I'm tired of losing these five pounds. Easiest way not to need to lose them is not to gain them. That starts tomorrow.

Happy Thanksgiving!

Year 3, Day 3

2009-11-24T13:39:00.000-08:00

I'm attempting to blog every day in my third year of remission with info, news, or on a person front, what's in my head, how I'm keeping my body healthy, etc.

Not directly related to cancer, but in my adult life, I have become much better about taking care of myself. I go to the dentist twice a year (this morning checked that off the list for another six months), I brush and floss, I eat healthy food in healthy quantities most of the time, I exercise on a regular basis, I stretch. While not everything that goes wrong in our bodies is preventable, a lot of it is. So I might not prevent any bad thing from ever invading my body again, but if I can keep systems in good working order, fewer things are likely to malfunction. And I feel better, have more energy, am generally more positive when my body feels good.

Recently, to complement my physical health endeavors, I have been working on mental health: working through/getting over crap that has happened at various points in my life, working on being less ignite-able (being angry all the time isn't healthy), working on having healthy relationships with people, working on setting boundaries for people who can't/won't have a healthy relationship, being kind and patient to people whether they "deserve" it or not. I'm trying to remember that people who I bump into in the grocery store don't know my life story any more than I know theirs. I hate it when people judge me based on not enough information, and so I am trying not to judge others. (By the same token, having a bad day is not a good reason to be an asshole.)

Am I living and breathing this in such a way that y'all should model yourselves after me? No. But I'm working on it. And as I work on it, I get better at it.

I already feel better much of the time at work, I feel much better when I'm driving, and when those two things are feeling pretty good, the rest of life is often not far behind.

Year 3, Day 2

2009-11-23T07:57:00.000-08:00

I celebrated two years cancer-free on Saturday! It is fabulous and amazing.

I have been having very significant memory problems recently. I'm not sure it's entirely chemo-brain — why would it suddenly nosedive this far out of treatment? — but I'm sure that's where it's rooted. Even before this recent episode of "What's your name again?" my memory has certainly not been at the same strength that it was pre-chemo. It drives me mad.

I have decided, memory-permitting (haha?), that I am going to attempt to post here every day with something that I'm doing to take care of my body or with news I've come across.

Of course, I was going to start this yesterday and forgot :(

So today's installment is a link to a blog post regarding cancer-related memory issues: click here

I am not a cancer warrior

2009-11-01T11:15:00.000-08:00

So I'm a card-carrying member of the Cancer Club.

I'd say that half the time (maybe more?), it's not anywhere in my consciousness.

The other roughly half of the time is split between many things:

• There is a good amount of time that what I'm doing is because of the cancer, though most of the time by now, the action/reaction is pretty habitual and "cancer" isn't in the front of my mind (i.e. sunscreen, avoiding plastics, avoiding synthetics and pesticides in foods).

• I have periodic conversations with people about health-related things — whether it's my experience with cancer, theirs, their experience in something else equally as crappy.

• I continue to have run-ins with physiological chemo leftovers (chemo brain, chemo boobs, heart rate issues).

• There are cancer blogs that I follow and cancer-related organizations that send me e-mails and show up in my Facebook news feed.

• I get an e-mail every so often from the oncology counselor at the hospital, letting me know about an event at the hospital.

• I learn about someone else getting cancer, which always instantly puts me back sitting on the hospital bed in the ER on that fateful day.

• I very rarely get an e-mail from someone who stumbled across my blog and writes to me looking for advice. I always answer those.

• And every once in a great while, I think, "Yeah, I had cancer ... Holy crap! I had cancer!" It is somehow still kind of surreal.

I have friends who I've met through cancer treatments and cancer-related events. There are many people who have started organizations, websites, etc. in their survivorship. They are very active in the cancer community (most often in the young adult cancer community). They (seem to) feel a deep connection with others with this disease and an angry passion about eradicating it.

Every now and then, I feel like I should be like them. Or like I should want to be like them.

But I don't.

I certainly believe that cancer is an awful thing, though there are many other conditions that are much higher on my "don't want it" list. I believe, more or less, that people don't deserve it, and that the current treatments for it are barbaric and awful — in too many cases, worse than the disease itself. I would love for there to be no more cancer, but I also believe that regardless of how much money we raise for research and awareness, we will always have cancer because we love our carcinogens too much.

It surprises me how many people go through cancer hell and don't change what they put into their bodies. (Not judging, just surprised.)

I have been told that Hodgkin's is not a lifestyle-related cancer. That means that it happened regardless of whether or not I was making healthy choices. It means that the plastics I am avoiding, the grilled meat I am avoiding, the cigarettes I am avoiding, the belly fat I am keeping off, the sun I block most of the time, have/had no influence on my cancer. But those things can help to cause other cancers, and I don't want those, either, so I have made choices. They're not always easy choices (have I mentioned how much I hate sunscreen?), but in my opinion, they're worth it. Suncreen is better than chemo. Life is still worth it, even without meat, without convenient drinks, without artificial sweeteners.

I'm rambling. I'm not really sure where I'm going. I guess I feel like there's a lot of ducking personal responsibility in this whole cancer thing. It's easier to yell at other people to fix the problem than to see how we are contributing to it ourselves. If we refused to purchase/consume items that were carcinogenic, companies would need to find another way to produce/package. Of course, that includes damn near everything, it seems, including carpet, particleboard, stain-master-type fabrics, most plastics, canned food/drinks (they line the insides with plastic), the list goes on and on. But I think food and drink would be the best place to start, followed by cleaning agents (soap, shampoo, detergents — we absorb a lot of the crap we put on our bodies).

So I suppose my efforts to gently influence people to change their habits, or even one habit could be considered cancer advocacy.

Of course, we've known for a while that smoking causes cancer, and there are still plenty of smokers. I don't suspect most people are even going to give a second thought to lesser evils. But it does frustrate me that they hand out water in plastic bottles at the Race for the Cure.

99% of the time, I have no negative feelings about not being a cancer warrior, so this is really not a quality-of-life issue. It just pops up every now and then.

It's not really even "popped" right now — I just felt like blogging and this issue was on my list of things to blog about. I'm sure I put it on the list the last time something triggered it. I wonder if that post would have been more interesting. Or more off-putting. Hm.

I don't have breast cancer

2009-10-11T17:25:00.000-07:00

While the title of this post could lead you to believe that this post is a rant on Pinktober, and while I could easily rant for a long time about the disgusting commercialization of boobs at the expense of real women dealing with a potentially fatal disease, that's not what this post is about :)

I went to see an ob-gyn about chemo boobs at the recommendation of my PCP. She was a neat lady and I felt like she was competent. She sent me for a mammogram and a breast ultrasound, since breast cancer risk is higher for those who have had radiation to the chest.

I went for those tests the next day. It's funny. At no point have I even remotely thought that I might have breast cancer. And yet, going for a mammogram — my first ever, since I'm just shy of 34 — I was nervous at the outcome.

It varied between pretty uncomfortable and low-grade pain. I can see why women don't go for these things when they're supposed to. The ultrasound, of course, was easy.

The ob-gyn had written the orders so that I could be given the results by the radiologist right then and there, which was nice. I have a few small cysts, but that's pretty normal. Both docs could feel them, though I can't. Nothing to be concerned about. Fabulous.

So later this week, I went to the podiatrist about some plantar warts. In the course of talking, I mentioned that I've had these removed once before, though clearly, it didn't work. He asked if they'd been biopsied. Um... no?

Apparently, there is some kind of carcinoma that looks like plantar warts, and if they've been around for a while and don't respond to treatment, they should be biopsied.

Huh.

Well, in the time that these things (two of them) have been growing, I've had five PET scans. I'm going to need to believe that if they were cancerous, we would have known about that by now. He said that he's never had a patient whose warts turned out not to be warts, and he's been a podiatrist for 30 years, but he's read about it in the literature. At least he's keeping up to date.

And so these little cancer things pop up and pop back down. And it's so weird when and how they show up. And I wonder if I would react to them the same way without my history, and I have to assume it would be different. If I hadn't had cancer, the possibility of a wart being cancer would be ridiculous, because things like cancer happen to other people, to older people, to less healthy people, not to me...

my amazing body

2009-09-27T15:22:00.001-07:00

My two-year cancer-versary approaches. Chemo ended the week before Thanksgiving, 2007.

There are things with my body that still aren't right. There is muscle strength and endurance that, despite training with a trainer for well over a year, I haven't yet been able to regain. (I will get there, it's just taking an awfully long time.)

But this morning, I had the opportunity again to say F-you to cancer, to chemo, to radiation. I completed my second sprint triathlon :)

My body might not be right yet, or right ever, but I am going to use it and push it and take advantage of having it every day.

Also in the exercise realm, I just started the process to become a certified personal trainer. A far-off goal I have is to start a program for cancer survivors who want to start to get their bodies back (regardless of what shape their body was in before treatment or what shape treatment left it in). It's a ways off for now.

blood test results

2009-09-13T09:20:00.000-07:00

I went the other day to get blood tests done, one of the things to do from my doc's appointment. I was supposed to go on a specific day in my cycle, which is why I waited so long.

So I went with orders for three tests, plus my orders for my oncologist, since I'm seeing him soon enough. Lots of vials.

I got a message from the doc's office yesterday: "You are not menopausal."

Now, early menopause was a possible side effect of chemo, but if that was going to happen, it would have happened a long time ago. Given that I'm still having regular periods and so on, I had assumed I wasn't menopausal.

I'm a bit disappointed that that's all I found out from those tests. Hm.

Well, I have an ob-gyn who the doc recommended I go see, which I will do shortly. See what she has to say.

the search for a cure for chemo boobs

2009-08-30T09:24:00.001-07:00

Time wears on, and still, my boobs rise and fall like the tides.

OK, maybe not really like tides. But they do swell and un-swell on a monthly basis. Except in June they swelled and didn't un-swell until August, and then it was only part way. And now they're swelling again. It's so weird.

So I went to a doc shortly after my previous post. She told me that everyone has a "thing" from chemo, and that's mine. Wow. That was a highly unsatisfying answer.

I made an appointment with the doc who I had initially wanted to see, but her next appointment was a month out. Again, my appointment was a month away, but I decided she had come highly recommended and that it was hopefully worth the wait.

So on Thursday, I had my appointment. She was great. I don't have any more answers than I had a month ago, but there are lots of things we're going to do to see what answers we get. She also gave me recommendations for supplements to take (vitamin E apparently can help to relieve symptoms of PMS) and called yesterday with a recommendation for an OB-gyn to go to. So I need to make an appointment with her.

It very well may end up that this is just a "thing" and there's not much to do about it — or that the treatment for it is something I'm not willing to do — but at least we're looking for some answers.

two years!!

2009-07-26T10:50:00.000-07:00

Happy two-year cancer-versary to me!

The doc counts years beginning at the end of chemo, which isn't until November, but today is the anniversary of when I got the good news that the cancer was dead — first negative PET scan. Hooray!!

Hodgkin lymphoma is most likely to recur in the first two years, so this is a big milestone!

I plan to celebrate in November, when I get the high-five from the doc. Giving thanks at Thanksgiving indeed!

a video from a long time ago

2009-07-20T20:29:00.000-07:00

This is a little outdated, but I just learned basic video editing...

Anyway, the hospital I stayed in does an internal video newsletter once every few months. There is a segment they include called "Patient Perspective" and I was the focus patient in December 2007. This is the clip from the newsletter. Yes, I know the resolution isn't great, but the original was much too large to upload to Blogger.

Chad, my dance teacher, is a great person and a fabulous teacher. He was an amazing help to me through the entire cancer ordeal, just by being himself. (Contrary to what Patricia says in her interview, I actually danced through treatment — I didn't wait until I was done.) Click here for more info about Chad.

it's been doctor week!

2009-07-18T12:14:00.001-07:00

I had many doc's appointments this week.

My visit to the new GP was completely unsatisfying. She said that everyone has "a thing" after chemo, and it looks like chemo boobs are my thing. She gave me a referral to a cardiologist (who I saw yesterday). She said she could take the plantar warts out herself (appointment for that was Thursday). She recommended Kirkland (read: Costco) vitamins.

In response to a query about why my water weight from my last period hasn't gone away, she said she didn't think it was water, and asked if I've gotten happy. *sigh* She prescribed me a water pill (which, as it turns out, has sun sensitivity as a side effect, so I've not taken it). She said she didn't think it would do anything, but if I wasn't careful, it would make me pass out. Thanks.

Not a great visit.

I went Tuesday night to the i[2]y meeting about fertility issues. The nurse there suggested that a general hormone panel would be an appropriate first step to finding out what's going on. When I find my next new doctor, I will make an inquiry.

Also at that meeting, I met a Hodgkin's patient. She's almost exactly two years behind me, as far as treatments and all are concerned. She's the first person I've met who has what I had. It was kind of neat to talk to her; I hope we talk again.

Wednesday, I saw the dermatologist. Well, I saw the derm's assistant. She did a full-body check-over, said that my skin looks good, I have a little sun damage on my shoulders (not surprising - years of red shoulders will do that), watch out for changes in about 15 years to the areas where I had radiation, keep using sunscreen but no need to flip out about turning a little pink as long as I'm sunscreen-ed. That was good news and definitely lowered the sun paranoia factor by a lot.

Thursday, I had the plantar warts frozen ... but they're still there. I'll need to look up how long it should take before they disappear.

Friday I saw the cardiologist regarding my crazy high heart rate when I exercise. He said basically that I'm unusual, that HR usually only spikes in people who are sedentary. They're going to do a few tests (next week and the week after) and see what's going on. He said he's not worried and doesn't expect to find anything worrisome and that I should keep doing what I'm doing. He also said that the effects of radiation wouldn't show up for another 10-15 or more years. I'm holding out for them never to show up :)

There it is! So I'm less sun-scared, I'm holding out for answers from the cardiologist, and I'm still looking for a new good doctor. Not bad.

In the mean time, I think I'm ready to register and commit to triathlon #2...

stupid side effects ... still

2009-07-11T16:04:00.000-07:00

I am ranty about side effects!

I finished chemo a year and 8 months ago. I expected all of the physical chemo baggage to be gone by now. But I'm still having chemo boobs, and I'm pretty sure that some of my memory issues and struggles with speaking are related to chemo brain.

When I asked my oncologist about chemo boobs, he told me to ask my regular doctor. I made an appointment with a new doctor (my old one is no longer available, which is super-sad) and asked who in the practice would be best equipped to answer questions about chemotherapy side effects. After being on hold for a while, the receptionist came back and gave me an appointment but stressed that they might need to refer me.

Who are they going to refer me to? Is there a branch of medicine that deals with long term side effects of chemo? (If yes, why wasn't I pointed in their direction a long time ago???) If not (which I assume is the right answer), where are they going to send me? To an oncologist? I have one already.

It will be interesting.

I have a laundry list of questions for her. I want to ask about chemo boobs and chemo brain, and when they're going to flippin' GO AWAY. I had some weird breathing troubles at the end of my triathlon and again once when I was training at the gym; I'd like to know what might cause that to happen. My heart rate is pretty high when I exercise; I want to know if that's a problem (and if/how I can ever make that better). I have some plantar warts on my right foot and need a referral to a podiatrist who can make them go away. (They were removed once, about 4 years ago...) I want to know about vitamins and supplements and which ones she might recommend as being the most effective/safest.

I have a lot of questions :) I hope she has at least *some* answers.

The whole thing is ... frustrating. The oncologist's job, as far as I can tell, is to make sure I don't die of cancer. Great! He did that. I'm exceptionally grateful to him for that. But there are other things going on that are impeding my quality of life. Who deals with those?

The local chapter of i[2]y is having a meeting next week on Tuesday regarding fertility issues. I am planning to go, as chemo boobs would be tied into hormones and therefore fertility. Maybe it'll be good.

I'm realizing, through reading comments of people on Facebook, that my way of looking at my cancer seems to be different than many other young adult cancer survivors. There is a conversation going on about people who are depressed when they finish treatment. The structure of treatments is gone, the friends who are nurses and other patients are suddenly not there on a regular basis any more. I get that. but DUDE! You're ALIVE! Celebrate! But that's just me, apparently.

I wonder if this is what made the difference for me: I never thought of cancer or chemo or how my life was at the time as "the new normal." It was always just an aberration. A long, pain-in-the-ass-kinda-scary-sometimes-terrifying inconvenience. And so when it was over, I was joyful! It was like I'd been sitting at this damned light forever and it finally turned green.

Is my life "back to normal"? In most ways, yes. I am working, I am exercising, I am over-extending my schedule, I am not sleeping enough, I am doing all the things I was doing before this ordeal. Is my psyche the same? Nope. It changes you. It has to. I don't think you can come up against any life-threatening experience and not leave a changed person. It hasn't changed me in the clichéd way that people asked about. But if nothing else, it's always there. It's not part of my daily routine. It's not part of my regular consciousness. But it's definitely there.

Going back to the thing on Facebook. The consensus in the small sample of people is that the oncologist should be taking care of their patients' mental health needs through this process. I completely disagree. Therapists who are trained to deal with cancer patients and survivors should absolutely be made available by the oncologist (or his/her office/nurses), but I don't think it's the oncologist's job. That's not what they're trained in.

I would like to help people who need help in dealing with cancer as a diagnosis, or cancer as a part of their history, or anything in between. I'm not really sure how I best can do that. If you have suggestions, please post them.

I'll let you know what the doc says on Monday. I am also going to see a dermatologist on Wednesday. Hopefully, there will be no news on that front.

The saga continues...

Also, I just have to mention that while my hair started growing back in October '07 (before chemo ended!), and I have been getting regular hair cuts for the last year, I still occasionally get comments on having "all that hair!" Bets on when the last comment will be made? I would have lost that bet already...

hello, strangers

2009-06-22T09:02:00.000-07:00

Just a quick hello to random passers-by. I know this blog has been linked on several cancer blog lists and that I'm getting some traffic that way.

The quick-and-dirty recap: I was diagnosed with Hodgkin's lymphoma in May, 2007. I had 6 months of ABVD chemo and a month of radiation. I was in remission by my 4th chemo treatment (though I had all 12 treatments anyway...). I'm approaching the two-year anniversary of my first negative PET scan (late July), though the doc started counting from my last chemo treatment (late November). I am healthy, feeling good, eating well, exercising regularly, loving life!

I had a PICC line which was a godsend for me and my little veins. I had a blood clot in one arm for a while.

I am very open to talking about what all went on, and have received messages from several random strangers asking for advice.

Regardless of why you're here or how long you stay, enjoy :) Fortunately, I don't have occasion to post too frequently now-a-days...

survivor's celebration

2009-06-21T23:53:00.000-07:00

Saturday is Banner Desert's Cancer Survivor Celebration. I am always somewhat iffy about going to these things, especially as I get farther out, but hey — an afternoon to celebrate survivorship! And there will be ice cream :) Hopefully some people I know will be there. We'll see...

Otherwise, I've been in good health, working out hard, training for another triathlon in the fall ... Life is good. Living well is the best revenge!

it seems like so long ago

2009-05-28T22:59:00.001-07:00

I was just thinking tonight, while getting my ass kicked all over the place in spin class, that two years ago, I was in the hospital waiting for the results of the biopsy to tell me what kind of cancer I had. Tomorrow is the anniversary of getting the answer, and Sunday is the anniversary of chemo starting.

It is almost surreal.

It feels like a really long time ago. So much just plain ol' living has happened since then. How fabulous is that?

I am grateful to have a healthy body, and I'm doing my part to keep it that way!

another clean bill of health

2009-05-16T13:24:00.001-07:00

I had an appointment with my oncologist yesterday. It was my 3-month check-up. Xray was clean, bloodwork was good, and I don't have to go back for another four months :)

I do want to see a dermatologist, though. Anyone in the Phoenix area have a good one they recommend?

I win :-)

2009-05-10T09:09:00.000-07:00

Yesterday, I participated in my first-ever triathlon. It was "sprint" distance, with a 750-meter swim, a 21K bike ride (that's 13.5 miles) and a 5K (3.1-mile) run.

It was hard, and it was amazing, and it hurt, and it was wonderful, and it came one week before the two-year anniversary of me being admitted to the hospital for Hodgkins.

I have taken back my body from the chemo, and I plan to continue to work out, get stronger, gain endurance, and keep my body healthy and strong.

It feels great!

(If you'd like to read more about the race, you can read it here.)

sick ≠ cancer

2009-04-09T16:17:00.000-07:00

Three passing things, all somewhat related...

First, I have some kind of upper respiratory infection thing going on. Haven't had a fever in a couple of days, but I'm coughing off and on like mad and have close to no voice. My throat hurt really badly for a few days but is feeling mostly better. In the days that I was feverish, I knew it was because of whatever viruses were ravaging my body ... but that doesn't stop the little cancer voice from reminding me: persistent, low-grade fever is a symptom of Hodgkins.

How can I get that little voice to turn off? If I had a persistent low-grade fever for no apparent reason, then perhaps I should be concerned, but sheesh — I was sick!

As a result of said sickness, I missed a dress rehearsal and a performance. When my hubby told the conductor I was missing because I was sick, his reaction was, "Sick sick?!" No... I appreciate the concern (and I enjoy the director very much), but I can be just plain ol' regular sick...

Last, things here have been really stressful recently, peaking over the weekend. Enter that little voice again: you know, the doctor said that the first tumor's growth was most likely triggered by stress, and the first two years are the time most likely to see a recurrence. You know, you're still in the first two years, and you've been having some massive stress. Wonder how your lymph nodes are doing...

If anyone knows how to either turn off or re-program that little voice, I'd appreciate the info...

random people passing through - edited

2009-03-19T08:52:00.001-07:00

I started this blog way back when, to share what was going on with anyone interested (family, friends, acquaintances) without them needing to call and ask or try to ferret things out through the grapevine.

I had no idea so many people I don't know would find it, whether by accident, looking for help, looking for answers.

I get 20-50 hits a week from people looking for information about PICC lines. My post with the picture of my PICC is one of the top returns in Google images. Crazy, no? I sometimes think I should go to that post and modify it to give more information on PICC lines, getting them, taking care of them. Haven't done it, not sure if I will, but it's still a possibility.

I have had this blog linked on three other cancer blogs that I know of and I have some readers through there. (Those are here, here, and here if you're interested.) It's also listed in the i[2]y list of cancer blogs.

Editing to add that I just saw that I've been listed as one of the top 30 inspirational cancer blogs here.

I have this blog in my profile in different places online, and other users have clicked through.

I have no idea how much of it anyone reads at this point. I'm always curious.

I have received multiple messages from people who were just diagnosed themselves or are close to someone who was just diagnosed, asking for advice and help in what to do, in how to deal. I do my best to share the most useful things I learned along the way and hope that it helps.

So to everyone who passes through (well, except the people who just look at the PICC pic, since they'll never read this post):

hello :)

I hope you have found what you were looking for. Feel free to drop me a line.

chemo brain

2009-03-13T23:27:00.000-07:00

I'm ready for this whole chemo-brain thing to go away.

I used to have a highly detailed, razor-sharp memory. On occasion, I'd transcribed conversations after they'd happened. I remembered names, faces, events, details within any of that. It was not always a perk, certainly, but it was often useful.

Chemo kicked the shit out of my cognition and memory. My ability to think, carry on a conversation, remember things is MUCH better than it was during and immediately after treatment. But it still ain't right.

There have been days at work when I'm writing a pass for a kid. I look at them and can't remember their name. Sometimes it just takes a few seconds. Sometimes they just tell me. I don't ask. If I need to, I'll find their folder or their instrument (name tag) or glance down my roster.

Earlier this week, I had an e-mail conversation with a friend about some compression shorts. I had gone out to buy a pair, but it turned out that the only size the store I went to had was XL. Paraphrasing the conversation, he said that wasn't very compressive. I said it would be if I put both legs in one leg. He pointed out that I wouldn't be very mobile. I said I'd get good at dolphin kicking. He mentioned that walking and running wouldn't work so well. I agreed and said that I hadn't thought about getting to the pool. Conversation ended.

It did not occur to me until this morning, on my way back from the gym, that what the hell was I talking about? I was buying shorts, not a bathing suit, and so whether or not I could swim in them was irrelevant. (In my slight defense, around this same time, I did buy a bathing suit for exercise.)

I wonder if this is what early stages of dementia are like?

I wonder when this wears off?

I was at a young cancer survivor meeting the other night (will blog about that later) and someone mentioned chemo brain and I said something about it wearing off, and someone else asked, "Does it?" Well shit. I hadn't considered that it wouldn't. I'm just still waiting. And really, that's what I'm going to continue to do. But I wouldn't mind if it hurried up...

Banner Desert fundraiser

2009-02-16T20:10:00.001-08:00

I received an e-mail about a fundraiser for cancer stuff at Banner Desert, where I was treated. There was all sorts of neat stuff in it, including some things I could have an extra degree of participation in, but it's on the same day as my triathlon. So I emailed back and said I was interested but it depended on what time because I'm doing a tri, etc., etc.

It turns out that the event is too early (11 a.m.) for me to participate, but she gave my contact info to the PR person (again) regarding the triathlon. She said that it might be inspiring to others who are going through what I went through. So PR might contact me again! How fun! We'll see...

my newest venture...

2009-01-30T19:05:00.000-08:00

On Tuesday, I registered to compete in a triathlon! Race date is May 9. I'm not looking to win — just to finish. It should be a pretty amazing experience, I think.

In any case, I decided to blog about training for that. If you want to follow, that blog is here.

lingering side effects - possibly TMI

2009-01-24T07:56:00.000-08:00

About three quarters through my run with chemo, my boobs started swelling and shrinking with my cycle. There were other side effects that mimicked pregnancy (according to my pregnant-at-the-time friend), so I just added this to the list of things that will probably happen to me if/when I get pregnant.

It's still happening.

I had assumed that when the boobs stopped this silly game, I would know that the lingering effects of my favorite poisons were gone and I could declare another small victory :)

But it's still happening.

I asked the oncologist about it some time ago, and he said to ask my OB. My OB was also my PCP and she rocked. And then she moved to MedCo, and I can't see her any more. I haven't found a new PCP or a new OB, so the question remains unasked.

They told me that side effects could last up to 18 months. I am beginning to wonder, though, if this is actually ever going to go away... And if it's a problem, other than bra-logistically.

this morning's check-up

2009-01-19T08:57:00.000-08:00

I am freshly home from my appointment with the oncologist.

Chest X-ray came back fine and normal.

Bloodwork came back mostly fine, but white blood cells and lymphocytes are low, so he wants me to have them checked every four weeks.

He said that chance of recurrence is highest in the first two years. One of those is over. He said that because I responded so well to the chemo and because they treated me so aggressively, he doesn't expect there will be any problems.

I mentioned the itchy, and he agreed that it was likely from the pool.

He commended me again for being fit and active, and said that "most women your age are heavy and sedentary, and it really is a shame." I agree (with the shame part, I don't know if "most" are that way or not).

I go back in four months.

I stopped back into the infusion room to say hello, but none of my nurses were there. On Friday, when I had bloodwork done, none of my phlebotomists were there. Where did everybody go? :-(

In any case, I am pleased to still be able to say that I am cancer-free. I hadn't expected otherwise, but I'm not sure that the little almost imperceptible voice of "what if" can be completely turned off.

Back to living life :-)

small odd gratitude

2009-01-08T22:50:00.000-08:00

We had some clementines that weren't so tasty any more. I thought I'd juice them and see if the juice was any good, in an effort not to waste them.

While slicing them, it (randomly) occurred to me that I was able to slice them, juice them, and I could have drunk the juice without thinking twice about it. I was grateful not to have fresh fruits on the "do not consume" list any more. It doesn't matter that there's dirt and germs on the peels. My body takes care of them :)

Not sure why that popped into my head this evening, but it did. One more little thing to be grateful for in this strangely the-same-as-before-but-not life after cancer.

a long, fabulous moment of forgetting

2009-01-05T13:01:00.000-08:00

On Saturday, I ran a 5K. I am thrilled to report that I beat my previous time by over 5 minutes :)

The race, of course, was outside. I put on my suncreen and didn't think about it again.

That's the first time I was able to "not think about it again" in roughly a year and a half. It felt good (once I realized I had done it) :)

I suspect that I haven't needed to be so concerned about it for a while - take precautions (sunsreen, long sleeves, umbrella when the sun is intense) and let it go. It was nice to let it go.

There have been a barrage of ads for a new(-ish?) cancer center in the area. They claim to have a wide array of services, including homeopathic docs. I wonder if they take patients who have completed treatment just to talk about lingering side effects and nutrition and things like that. I'm going to check into it.

On that topic, they have a billboard that reads, "Anyone who says winning isn't everything has never fought cancer" or something significantly close to that. My initial reaction was "fuck yeah!" but then I got to thinking about it ...

Having cancer has certainly changed my life (though not in the ways that most people inquired about - my partying hasn't decreased at all ;) ). And while of course I would have needed to survive in order for that to happen long-term, I don't think just getting through it would be considered a "win." Or maybe it'd be like a win because the other team forfeited. It seems to me that for cancer survival to be a win, there needs to come from it more than just surviving ... but that's just me.

Happy End to 2008!

2008-12-27T22:43:00.000-08:00

Well, I am winding down 2008 with a slight cold but otherwise in fabulous condition :)

I have set a goal to complete a mini-triathlon by the end of 2009. That's a 750 (or sometimes 500)-meter swim, a 20 K (12.4 mile) bike ride, and a 5K (3.1 mile) run. Can I do that now? No. But I can do some of it, and I'm sure that in time, I will be able to do all of it. Honestly, I just want to be able to finish it. I can do that.

I swam 75 meters without stopping today, for the first time :) Baby steps...

I will be able to train with a trainer for a short while longer. In my ideal world, I'd train once a week with a trainer, year round. It's expensive, though :(

Here's to good health and toning up the body!

the itch...

2008-12-17T21:23:00.000-08:00

...is definitely pool-related, and putting lotion on right after a shower right after swimming helped a lot.

small panic over :)

we now return to our regularly scheduled program...

(And if you're in AZ, you have 13 days left to make a tax credit donation. I'm accepting. Send me a message for more info.)

I didn't call...

2008-12-15T20:51:00.000-08:00

By this point, a day after my massage, most of my soreness is gone :)

I was going to call the doc today — that was the plan over the weekend. I always plan out what I'm going to say. Since I'm going to be leaving a message, I want it to be as clear as possible. Well, while I was rehearsing said message, I realized how ridiculous and paranoid it sounded, so I didn't call. I haven't been itchy since Thursday night, which is the last night I went in the pool. My back is mostly better today, after a massage yesterday. It was just coincidence.

Thanks for putting up with my little freak-out session [sheepish grin]

I had a pool session with my trainer tonight, and it kicked my sorry butt. It was really good :) Just what I needed to ramp up my swimming.

Off to shower and put on some lotion and see if that helps the itch.

soreness and knots and stress

2008-12-14T16:44:00.000-08:00

I went to the gym last night and did a good long stretch and foam rolling when I was done. Typically, when I roll out my legs, there might be a knot here or there, but those muscles by this point are pretty smooth.

Legs last night were knot city.

Last night, TJ rubbed my shoulders and it felt like he was rubbing bricks.

This morning I was kinda stiff through my back, neck, and shoulders.

So currently, I am attributing back stiffness to general stress, to which I am also attributing the knots in my legs and soreness in my neck, shoulders, and back. There has been no shortage of stress 'round here.

Working on this assumption, I went to get a massage this morning. Neck, back, shoulders: knot city. The soreness I had this morning is gone. The soreness I had before is still there. A couple of friends who do massages more often said that it would take a couple of days for that soreness to go away, if the massage will do it, and that I might feel worse before I feel better (and not to panic if that happened). So we'll see how it feels in a day or two or three...

In the mean time, I am less freaked than I was yesterday. It sure would be nice for that trigger not to be so sensitive...

hoping hoping hoping it's nothing

2008-12-13T11:35:00.000-08:00

For the last month or so maybe, since I started swimming on a more regular basis, my skin has been super-itchy. I have been sometimes putting lotion on it, which sometimes helps. I've been making sure to wash more thoroughly after being in the pool, taking showers that aren't quite as hot, etc., trying to reduce drying agents. I assumed that the itchiness was either a reaction to chemicals in the pool or dry skin as a result of the season and the pool.

For the last week-ish, my back has been sore, just right up the spine. If I'm sitting or standing normally, I don't notice it. When I twist, it's a "I worked out too hard" kind of sore ... but I hadn't worked out those muscles when this started. Also, I can do general back exercises and they don't bother the soreness at all.

For reasons unknown, I went just now and looked up the vague symptoms that help lead to Hodgkins diagnoses. Itchy skin and vague back soreness are both on the list.

I'm a bit freaked. OK, I'm a lot freaked.

Everything else is fine. I have no other potential symptoms, my breathing is fine. I think that maybe my inability to explain why my back is sore is ramping up my current anxiety. Itchy skin I can explain away.

Lymph nodes in my neck are not noticeable. I don't know how to check any of the other ones. Though I am guessing if this actually *is* a recurrence, it would be in the same place as the old one, and I can't check there.

I'm going to call the oncologist's office on Monday and see if he thinks I should be concerned. I'd like to be able to talk to someone sooner, but it's not something to bother the doctor on call about, I don't think.

Fuckity fuck fuck fuck.

reclaiming my body, and some thoughts for Tam

2008-11-29T23:52:00.000-08:00

I saw my abs today! It was their first sighting in a year and a half! I finally feel like I'm getting my body back. It has been slow, but little marks of progress along the way make it a little easier.

I decided earlier this week to "test" to see if I still need to wear sunscreen all the time (it's getting a little old...). I had a couple of errands to run each day but was mostly in the house, so I didn't put on sunscreen ... and I have a couple of faint sunspots on my face. Yup, still need to wear it. While I understand that it's a good idea to wear sunscreen in general, if I'm just going to the grocery store and back, it'd be nice to save the few minutes it takes to put it in, as well as saving the sunscreen for when I need it, as well as saving my skin from having that crap all over it. It's OK. It's my price for living right now. Chemo messed up my skin (temporarily), but chemo let me live to complain about it.

And Tam, I read your birthday blog post ... For whatever it's worth, the anti-nausea drugs they gave me made my vision blurry, but my eyes cleared up just about immediately after treatments ended. I had trouble with Neupogen, so they switched me to Neulasta - is that available to you? Maybe it would help more? I needed only one shot, and it sent my white cell count through the roof! I had all kinds of "chemo brain" and often had trouble holding a normal conversation because I couldn't think of words and because I would forget what I was talking about mid-sentence. It went away after treatments ended. I have a little trouble every now and then now, but it's mostly gone. And they said side effects could last for up to 18 months, and I'm still inside of that window. The butt problems went away, too.

As far as life after cancer and its problems ... no, it's not the same as it was Before. But it is good, or it can be good. The scans aren't endless - they just feel like it, especially because we have so much life left. Hell, I'll certainly outlive my oncologist by quite a margin! It is super-easy to get bogged down by all of the negative possibilities — there are so many of them! I have just decided that they are not a possibility, and I do my best to live so that my thoughts, my hopes, and my actions all match. It ain't always easy, but it's worth the work!!

If you want to talk, let's figure out a way to exchange e-mail addresses without posting them here. (If not, that's totally OK, too.)

Hope you are feeling a little better...

I like being helpful

2008-11-25T13:08:00.000-08:00

A friend of a friend was recently-ish diagnosed with lymphoma and was in the same hospital I had been in. I have never met her, but I wrote her a letter, telling her stuff that I found helpful when I was going through all that crap, hoping that one or two pieces of it would be useful.

She called a few days ago and left a message about how nice it was, how helpful it was, how she feels like she has a friend and hopes to meet me one day.

:-)

A coworker mentioned to me a couple of days later that her friend was just diagnosed with some kind of cancer, and did I have any words of advice for her? I edited the letter and sent that to her.

I got a message on a message board today saying that her husband is in the process of being diagnosed with lymphoma (type currently undetermined) and can I help her to help herself and to help him? I sent her an email with what I could think of and attached the revised letter.

It is kind of cool that people are seeking me out for help, support, advice. I hope that something I tell them resonates and is useful. All feedback I've gotten so far has been positive. Maybe I'll post the letter here... Hmmm...

In the mean time, Happy Thanksgiving!

milestone :)

2008-11-16T10:33:00.000-08:00

Yesterday was my one-year anniversary, according to my oncologist for being CANCER-FREE!! HOORAY!!

It feels like more than a year has passed. Funny how days go so fast, years go so slow, but bunches of years go so fast.

We had a little celebratory dinner with friends. Yum!

I also had a good hard work out at the gym, which felt good. I still have this crazy little hope in the back of my head that the "right person" will read my blog, or the magazine article and will decide to gift me dance lessons or personal training at my gym. That would so rock my world.

(In real life, things like that don't tend to happen, but hey, a girl can dream, can't she?)

Regardless of any of that, I am happy to have been here for another year, gettin' things done, living life, loving life.

Cheers!

how to say "thanks"?

2008-11-01T15:04:00.000-07:00

In June, I went to a survivors' brunch at the hospital. As a door prize, I received a BB King box set of 4 CDs. The lady giving out the prizes said that he donated them himself. Pretty cool.

So I know it's months later, but I'd like to write a thank you note, saying I won them and have enjoyed listening to them thanks for donating them. I don't know how to go about finding contact information.

Any suggestions?

I'm getting rant-y about cancer!

2008-10-26T17:30:00.000-07:00

An article that supports one of my rants!

Breast cancer stuff frustrates me. This is not because I think that breast cancer research is bad or unnecessary or frivolous. However, many many more women and people die of lung cancer than breast cancer. The 5-year survival rate for lung cancer is worse. And heart disease is the leading killer of women overall (though that changes by age group).

A chart of causes of death by age group.

A less detailed page, compliments of the CDC. (The first link is actually on this website.)

According to familydoctor.org: "Women are at risk for heart disease and heart attacks, just like men. In fact, heart disease is the leading cause of death among women over 65. American women are 4 to 6 times more likely to die of heart disease than of breast cancer. Heart disease kills more women over 65 than all cancers combined." (my emphasis)

Do you hear about heart disease? Not so much. Symptoms for heart attack in women are different than they are in men, though many doctors tell both genders to watch for the same symptoms. Most women don't have chest pains. Women are also less likely than men to survive a heart attack.

OK, so am I trying to start a panic? No :) I'm just (highly) frustrated with the skewed coverage of women's health issues.

Another of my cancer rants:

There are walks, runs, golf outings, drives at the grocery store, and a gajillion other ways that people raise money for cancer research. People turn out in droves for these things, fundraise lots of money for them. Many many people are involved. I don't know anyone who would not like to see a cure for cancer.

Of those zillions of people who actively participate in these events (I won't even count people who just give money, even if it's a lot of money), how many of them have changed their lives? My doctor told me that two-thirds of cancers are lifestyle related.

Two-thirds of cancers are lifestyle related.

That means that if everyone who had known carcinogenic habits changed them, well over half of the incidents of cancer would (should) disappear.

That makes me angry. It makes me angry because it's another example of an external locus of control that seems to have invaded our collective mindset. "This is such a horrible disease. Why can't they fix it?" (puff puff on a ciggy)

Now, I certainly don't begrudge research and have benefitted greatly from it. Research enables me to be sitting here typing to you instead of being in an urn on Tom's mantle (or wherever). And even if two-thirds of cancers went away, one-third would still exist (including mine).

"But it's so hard." Uh-huh. So is hearing the words, "You have cancer" ... and then dealing with everything that comes after it, presumably for the rest of one's life (though I can't report on that yet for sure).

"It won't happen to me." Uh-huh. I didn't sign up, either.

(I had other things I was going to list here, and I've forgotten what they all are...)

Anyway, what is carcinogenic? A whole hell of a lot of things.

•plastics: they say only plastics with PBAs in them, and that you shouldn't store stuff in them or use them in the fridge/freezer/microwave. I don't trust any of it — a couple of years ago, none of it was dangerous... They (whoever "they" are) did research on breast cancer, and they dissected a whole bunch of breast cancer tumors. Know what they found inside them? Plastic. Except for dry goods in the pantry, I've sworn off plastic (almost) completely. This means that I've given up yogurt (if you ever see it in a container that's not plastic, let me know) and, for the most part, cheese. Can't buy cheese in not-plastic, either.

• grilled meat: lots of crap in there. Meat in general is not recommended for a healthy diet, and grilling it actually creates carcinogens in the meat. Lots of them. It's unfortunate, as many people turn to grilled meat as a "healthy alternative" to meats cooked in other ways. Better for your arteries, but not better for other things.

• pesticides: I read a piece that explained that the best fruits to buy organic are the ones where you eat the skin. Strawberries washed 12 times still had traces of chemicals on them. We've started buying some organic fruits and vegetables, though we haven't been able to find organic red delicious apples anywhere nearby.

• tobacco: duh

• obesity is almost as large a risk factor for cancer as smoking. And we're so used to looking at overweight people and damning the supermodels that we have an unhealthy view of what healthy looks like. (I am not in any way saying that we should strive to look like supermodels!!) I have about lost count of the number of people who have called me "skinny." I'm not skinny. My upper arms and legs still jiggle. I'm not fat any more, but I'm not skinny. It's not a matter of appearance — it's a matter of health. (Of course, there are many many other unpleasant diseases that obesity increases your risk for, but I suspect you know about those already.)

• one of the artificial sweeteners (I think it's aspartame) when it heats up. In a soda, if the soda is stored somewhere hot, that'll do it. Also not good to bake or otherwise cook with in place of sugar. I've sworn off artificial sweeteners altogether, as they have a variety of health issues beyond cancer. I'm working on weeding out the sugar, too, but I can only do so much at one time :) And people keep buying me tasty treats, ones that they know I really like :) One day soon, I'm going to put out a request for that not to happen any more.

• the sun: as just about everyone knows, I've become obsessive about wearing sunscreen, and about what kind of sunscreen I wear. This is mainly because "melanoma is a common secondary cancer" and I could see myself turning pink very quickly, even in indirect sun. I suspect that by the time next summer rolls around, I will still be cautious about wearing sunscreen outside, but I won't be so gunshy about being in the sun. Regardless, wearing sunscreen helps prevent wrinkles, too, as cellular damage can happen even without a burn.

• cell phones?: I read two articles (that I will post if I can find them) about cell phones. One indicated that men who carry their cell phones in their pockets tend to have less sperm than those who don't. I realize that this is, at best, correlated and not necessarily causative, but still. The other talked about how, while there is no cancer link between cell phones and cancer, there is abnormal cellular activity within 10 minutes (I think) of talking on a cell phone (that is, talking for 10 minutes or more). So maybe or maybe not carcinogenic, but I like my cells to be normal and happy :) So I use my hands-free when I talk on my cell phone for more than a minute or two. And if possible, I don't leave it in my pocket.

OK, that's enough of the rantiness for now. I am curious to opinions, however, if you'd like to share them...

cancer, death rates

2008-10-26T08:32:00.000-07:00

I subscribe to Nutrition Action Health, a small magazine with information about health and nutrition (as you might have guessed). They often have interesting articles to read, and every edition has a comparison of a bunch of different brands of some type of food (cereal, yogurt, etc.). They rate them all on a bunch of different criteria. It's interesting.

Anyway, a new copy came yesterday, and the cover article is "Cancer: What You Need to Know." So I looked through it. It lists several kinds of cancers, what elevates risk for them, how many people are estimated to get them in 2008, warning signs. There is also a chart of the top 15 killers for men and women. The chart was fascinating to me. (Chart info cited from the American Cancer Society. Numbers represent estimated deaths in 2008.)

For women:
1- lung (71,030) (Lung cancer was not one of the cancers they gave all of the other information for, interestingly enough.)
2- breast (40, 480)
3- colon & rectum (25,700)
4- pancreas (16, 790)
5- ovary (15,520)
6- non-Hodgkin lymphoma (!!!) (9,370)
7- leukemia (9,250)
8- uterus (7,470)
9- liver (5,840)
10- brain (5,650)
11- myeloma* (5,050)
12- kidney (4,910)
13- stomach (4,430)
14- bladder (4,150)
15- cervix (3,870)

For men:
1- lung (90,810)
2- prostate (28,660)
3- colon & rectum (24,260)
4- pancreas (17,500)
5- liver (12,570)
6- leukemia (12,460)
7- esophagus (11,250)
8- bladder (9,950)
9- non-Hodgkin lymphoma (9,790)
10- kidney (8,100)
11- brain (7,420)
12- myeloma* (5,640)
13- melanoma (5,400)
14- oral cavity & pharynx (5,210)
15- larynx (2,910)

*I didn't know what myeloma was. Cancer of the plasma cells in the bone marrow. Treatable but not curable. I'm glad I didn't learn that one through experience.

There is another chart that shows 5-year survival rates (as a percentage) in four columns: total, local, regional, distant.

Looking at local (meaning it hasn't hit lymph nodes) survival rates, cancers that are in the 90s for 5-year survival (of the ones listed) are female breast cancer, colon/rectum, kidney, melanoma, ovary, prostate (100%), thyroid (100%), testicle, bladder, cervix, uterus. This means catch it early!

Those in the 80s were larynx and oral.

Those between 50 and 79: stomach.

30-49: esophagus, lung.

Below 30: liver.

For "distant," meaning it had gotten into lymph nodes and spread to distant sites in the body (the explanation given to me at the hospital was, "Does it cross over the horizontal plane of the diaphragm?"), all were at or below 30% except prostate (32), testicle (70), thyroid (56).

OK, enough numbers. They were really interesting to me.

The more detailed write-ups were about cancers of the breast, colon/rectum, esophagus, kidney, ovary, pancreas, prostate, and uterus. Of those, prostate was the only one that didn't list weight as a risk factor. Ovarian cancer, the research is inconclusive about weight.

That leads me to my next cancer rant, but that will need to wait for another time.

PSA: tax credit money in AZ

2008-10-18T09:56:00.000-07:00

We take this break from our cancer programming to bring you this message.

If you (or someone you know) live in and pay state taxes in Arizona, you are able to receive a tax credit of up to $200 ($400 if married filing jointly) when you make a donation to a public school.

I am soliciting tax credit donations for the instrumental music program at my school. If you are able and willing to give us some of your tax money, follow these steps:

1- Download the form here. Print it out.

2- Fill in the information.

3- Check the box, and on the line underneath of it, write "Bethune Instrumental Music"

4- Mail the form to the address given, along with a check in the amount of your choice.

About a year from now, I will get a list of all of the people who donated money to my program. I'll send you a thank you note written by me, and some thank you notes written by kids. So you give us "free money" and get thanked for it — what could be easier?

If you are unsure as to how the tax credit program works, ask me and I'll give you more details.

this just fell into my lap

2008-10-12T14:50:00.000-07:00

The guy who runs this posted a comment a few posts down. I checked him out and found all kinds of cool stuff that made me cry. I kinda wish I'd known about this a year and a half ago ... though with the mindset I was in, I'm not sure I would have used it.

There's also a webpage: I'm Too Young For This. I might buy some of their paraphernilia. I definitely would have bought it a year and change ago.

Check it out.

carcinogens in food

2008-10-10T17:49:00.001-07:00

Most people know that grilled beef has lots of carcinogens in it. But lots of people opt for grilled chicken over fried in an effort to be more healthy when eating out. This article might sway you.

no more PETs!!

2008-10-10T13:55:00.000-07:00

I had an appointment with my oncologist this afternoon. I already knew via phone call that I had another negative PET scan a couple of weeks ago, so I expected nothing useful in this doc's visit ... which is OK :)

So while there was no new info, per se, he did say that in three months, instead of getting another PET scan, I should have just a chest X-ray; he wants to limit my radiation exposure. Unless the X-ray shows something or I have symptoms, I am DONE with PET scans!!! Hooray!!! No more IVs! No more radioactive injections! Hooray hooray hooray!!!!

This whole stupid cancer thing is more and more becoming a thing of the past. Not that I'll ever be rid of it (and with all I've been through, why would I disown it?), but it sure is nice for bits and pieces of it to fall by the wayside!

My one-year-mark is in just over a month :)

And, unrelated, one of the chemo nurses came to talk to me just before I checked out. We were talking about health and fitness. We had talked while I was going through treatment, and she is recently having some troubles, blah blah. It was cool for her to seek me out, though :) She said she's considering joining my gym. We could be workout buddies :)

Ahhhhhhhhhh...... :) I feel good!

results are in!

2008-10-04T23:52:00.000-07:00

I got a phone call regarding my recent PET scan, and it is another negative one! Woo-hoo! I had no reason to believe it would be anything else, but it's always nice to get confirmation.

I have an appointment with the oncologist on Friday. I don't expect it will yield any particularly useful conversation, but I'll keep you posted.

no, not Mambo No. 5...

2008-09-26T10:49:00.000-07:00

I had PET scan number 5 this morning. I'm an old pro. Since all of them have been negative so far, and I have no reason to believe any of them will ever be anything but negative, my only anxieties about these are getting the IV. The last two have both been one-stick days, and fortunately, today was no different :)

They check blood sugar, as the test apparently won't work if blood sugar is too high. I always forget about that, so there's always one more poke than I'm ready for. Not a huge deal (or I'd remember it), just annoying.

Anyway, this morning was easy. My check-in time was 6:30, so I was (am) super-sleepy. Regardless of being there before the sun came up, I was third in line to check in. I fell asleep in the machine (which is OK, as I was strapped in).

I put sunscreen on before I left (have I mentioned how much I LOVE sunscreen?), and the nice lady who walked me out neglected to mention that I had a white stripe down my nose.

Anyway, my doc's appointment isn't for two more weeks. I'm guessing I'll get a "your scan was fine" phone call some time before then.

nothin'

2008-08-21T19:40:00.001-07:00

Fortunately, there's been nothing noteworthy happening :) I'm back at work - and it's been crazy! I'm working out at the gym pretty regularly. My long-term goal is to do a mini-triathlon. Not sure what my time frame is. Depends on how well I can improve my swimming, really. We'll see...

In the mean time, I have a PET scan scheduled for late September and a doc's appointment shortly thereafter. I don't suspect there will be anything noteworthy, but I'll definitely let y'all know that there's nothing new to know ;)

Here's to being healthy, staying healthy, living life :)

a neat promising therapy

2008-08-09T07:21:00.000-07:00

This article on a potential new treatment for metastasized cancer was sent to me by a brother-in-law. It's pretty neat.

the hair project has officially ended

2008-07-23T17:08:00.000-07:00

I decided that since
1- my hair was getting annoying and
2- it was longer than I normally wear it, and I grew it out from that length a couple of years ago and
3- I really just wanted to see if it would be curly and
4- it's not

it was time for a cut ...

A friend's recent cut-and-color inspired me to perhaps add some color of my own. I had never dyed my hair before. I wasn't sure I was going to today. I knew the cut I wanted, and I picked a color :)

Here are the results of today's trip to the salon:

Funky, no? I'm kinda diggin' it. I'm not sure I'll get it colored again, mainly because there are other things I'd rather spend money on (and the chemical-ness of it was kinda gross), but it was fun to do :)

it's been a year :) and other misc tidbits

2008-07-20T16:07:00.000-07:00

Well, it's been a year since my first negative PET scan :) The docs are counting time from when chemo ended, which isn't for another several months, but I'm celebrating from the first sign of no cancer!!

One year down, 65 to go ;)

Also, I've been working out regularly, sometimes with a trainer. While it's frustrating that I'm not nearly as strong as I used to be, it feels good to exercise hard. I'm grateful to be back in that routine.

I have gotten together about 100 pages of my cancer book. I still have a lot to go (I wonder if it will be too long?!?), but it's been fun and interesting to work on it!

And last, if you see a Summer 2008 copy of "Spirit of Women" magazine, look inside — there is an article about me in there!

hair project

2008-07-06T23:37:00.001-07:00

Here are pics for July, a little overdue. My hair is long enough now to be called shaggy. The back always turns out. I am likely to get the back trimmed in the next few days. I'll ask them to trim the underside a little shorter than the outside, so it turns under.

I've been thinking about how I'm going to have it cut/styled when the hair project ends, either at the end of 2008 or when I get sick of my hair, whichever comes first. Suggestions? Parameters: must be wash and wear — no product, no hair driers. Limits the options, I know...

this is dang expensive...

2008-07-04T09:11:00.000-07:00

I received an e-mail from my health insurance company, asking me to look at something on their website, so I logged in. While I was there, I checked out "claim history." Of course, it is extensive. I downloaded it and used the "sum" function, just to see... Now, before I give you my partial running total, a detail: My insurance changed last summer, so this total is for the last 12 months. It does not include my 3 trips to the ER, my hospital stays, my first two (three?) chemo treatments. I am thinking about contacting my previous insurer to get numbers for all of that.

OK, that said, the total for July '07 to July '08 was $136,111.77. Chemo, radiation, doc's appointments, blood draws, PET scans, PICC lines. I expected it to be more than that, but that's still not chump change.

And I haven't forgotten about the hair project pic. I should have it up later today. If not, definitely tomorrow.

hello, strangers

2008-06-15T15:03:00.001-07:00

As you might have noticed, I have a counter on my blog. It is interesting to me to see how many hits this blog gets, even though I don't know who it is.

Through the stat counter, I can find out the rough location of people who click on my blog, and the link they used to find my blog, if any.

Most of the hits I've gotten since putting this counter on have been through Google and have landed on the picture of the PICC. These hits are literally world-wide.

When I did the radio show, there were a few hits from Chad's website.

There are occasional hits from Facebook and from a message board I frequent when I have time.

Some people know about the blog and just type in the address. I can usually take a general guess as to who those might be based on location, though there are a couple that have me baffled.

Anyway, I'm just taking a moment to say hello to all of you who I don't know, or who I know but don't know you're here. Feel free to leave a comment saying "hi." If you want to contribute to my book, feel free. I had put a deadline on it, but I've done much less work on it so far than I had expected.

With that, off to the gym! Getting stronger every day!! I'm planning to run another 5K in the fall, when it's a little cooler. The new most recent time to beat is roughly 34:00, but I'd still love to get back down to under 30:00.........

And Alicia, wherever you are, whatever is going on, I hope you're OK...

hair project

2008-06-02T15:48:00.001-07:00

First, good news: I saw the radiologist today who said that I don't need to see him any more :) I'm down to one doctor, once every two months. Rock on :)

Here's what the hair's looking like these days:

I love giving good news :)

2008-05-21T18:32:00.000-07:00

I had another appointment with the oncologist on Monday. He confirmed that the PET scan results were negative. The chunk of scar tissue has shrunk slightly. Blood levels are all normal. Lymph node is just about gone. And I don't have to go back for two months :) Hooray!

Goodness goodness goodness all around :)

4 for 4!

2008-05-09T08:52:00.001-07:00

I got a phone call from the oncologist's office this morning - my PET scan from last week is negative!

We're on a roll, baby!

And, while we're at it, the swollen node in my neck is almost imperceptible :-)

I love having good news to share!!!

it's almost that time...

2008-05-04T22:27:00.001-07:00

We are rapidly approaching the one-year anniversary of my entrance to the hospital (May 16). It actually is kind of making me nervous, like there's something inherent about May that is going to cause me to wake up one morning and not be able to breathe again.

I just sent an e-mail a few minutes ago, and in it, I was bitching a bit about having our district festival on Wednesday, and how that means I'm in teacher mode until 9:00 Wednesday night, after which, we get to clean up. I'm conducting the beginning band, so it's not like the afternoon when kids are rehearsing is putz time. (Actually, though, I'm looking forward to conducting a band that has more than 20 kids in it.)

Anyway, in the e-mail, I said that last year, the day of the district festival was the first day I was in the hospital, so I'm glad this year to be going to the festival instead. But even as I typed it, "hopefully" was somewhere in my head. As if to say, I won't believe that I will actually be there until I'm there.

I'm planning our spring concert and how to wind down the year with collecting instruments and such. I wasn't there for any of this last year. And there's a funky little something inside that makes me wonder if I'll be there for it this year.

Now, in real life, I have very little reason to believe that I wouldn't be there for it. (The only anything is the swollen lymph node.) I'm planning for it, and it all should be fine.

I was at the gym on Friday and today and did some decent cardio and felt fine. Breathing was fine, knees were fine, chest was fine - everything was fine. I think that once I get past some of these events that I missed last year, I will be fine. But for now, it's a funky kind of background paranoid, like when you see something out of the corner of your eye, but as soon as you turn to look at it, it disappears.

Only time will tell.

hair project

2008-05-04T17:14:00.000-07:00

Two pics of the latest 'do. I might need to get it cleaned up a bit - it's driving me a bit mad. But for now...

PET

2008-05-02T11:32:00.000-07:00

Had a PET scan this morning. I had the same tech as last time (by request) and it was a quick, easy, one-stick ordeal.

As I always say, if you're going to get injected with radiation, you shouldn't have to be stabbed more than once to do it.

sunscreen

2008-04-30T16:58:00.001-07:00

I was able to use my regular SPF45 sunscreen yesterday afternoon and this morning with no discomfort. One more thing to check off the list :)

general update

2008-04-29T11:07:00.000-07:00

I had my monthly check-up on Monday last week.

My lymph node is still swollen. It has gotten marginally smaller, maybe. Definitely hasn’t gotten bigger. Definitely hasn’t gone away.

“You know, I can’t guarantee that that’s not cancer.”

I know. I’m willing to do whatever needs to be done, but I don’t want to do anything extra. If he says, “You know, that needs to come out so we can biopsy it,” well, let’s get it out! But he maintains that it’s OK to be watching it for now, so we’re watching. I’m not feeling really stressed about it, though I suspect that some “background tension” will be noticeably absent when this little thing isn’t puffy any more.

Skin is still sensitive. I’ve been in sunscreen and/or long sleeves all the time. I’ve been using Neutrogena Ultra-Dry Sheer Touch SPF 45. Last time I went to the store, there was only SPF 55, so I got that. No big deal, right? Well, while I was in NJ, putting on sunscreen started to burn my face. (Not a sensation I’d recommend.) Then just plain moisturizer burned. Then soap and water. Then I had a rash. So I stopped using the sunscreen and was careful to stay out of the sun as much as possible.

I checked the two bottles of sunscreen when I got home. As it turns out, SPF 45 and 55 have very different ingredients. I am hoping that the problem was just something in the 55 that’s not in the 45. I haven’t had sunscreen on since Saturday, but my face accepts moisturizer now. I am going to try sunscreen this afternoon before my commute home. If it’s not the sunscreen and it’s my face, I’m not sure what I’m going to do…

The doc didn’t have much else to say, except that it’s time for another PET scan. I have it scheduled for Friday, but I won’t get results from it until my next appointment, which is on the 19th. I assume that if there’s a problem, they’ll call me, and that as long as I just keep my next appointment, all news should be good news.

I got copies of my most recent blood work, and for the first time in almost a year, all levels of everything are normal!! My immune system is finally back up and running in the realm of “normal,” though I’m not sure where is typical for me specifically. No matter. It’s good to be able to take myself off of the “immuno-compromised” list.

My hair is driving me batty. I’m not sure that this hair project is going to last a whole year. I’ll post pics later this week, but I think it’s going to need to be cleaned up. It’s coarser than it was before (though not terribly so), which might be why it’s resisting being parted. It’ll probably just need to be longer. But I need to clean it up. I’m kind of missing the days of #2 all the way around.

In general health … TJ and I have been vegetarian at home now for two or three months. It’s been going well and has been much easier to do than we had anticipated. We have had lots of very tasty food that just doesn’t happen to have meat in it. I’ve also finally gotten my sugar cravings back under control (which is to say, close to non-existent).

In cancer-preventing health:

I have replaced the plastics that I was using for lunches and other food storage with glass. I’ll use plastic to hold dry goods in, but that’s all at this point. This includes not drinking bottled water. (At this point, if I drink bottled water, I can taste the plastic.) The only thing I can’t find is an ice cube tray that isn’t plastic…

I had been avoiding grilled meats, but going veggie made that a lot easier.

I’m overly careful with the sun (“Melanoma is a common secondary cancer” – no thanks! once was enough!) and am looking forward to the sun not being an adversary any more. I’m adapting to constant sunscreen and can probably do that indefinitely without too much bitching, but the long sleeves and staying out of the sun with sunscreen on is not making me happy.

Unless I know that I’ll be on for about two minutes or less, I don’t use my cell phone without the earpiece. I read some studies they’re doing have shown that cell phone use causes cells to do funky things that they don’t normally do. No specific cancer link (yet?), but I don’t need to wait for more info, really.

I have cut out artificial sweeteners whenever possible (I don’t always know, and I don’t always remember). I know those links are not strong, but that there’s a link at all makes it worth it. I figure, stuff that is that processed isn’t good for your body anyway, regardless of its potential as a carcinogen.

I think that’s all, but it’s been plenty. Aside from the sun thing, I feel comfortable in these changes. And really, I think they’re all healthy, even if they have no bearing one way or the other on cancer.

I’m starting to work on my book in slightly more tangible ways than just thinking. It’s kind of fun :) I hope it turns out well.

*whew* I think that’s the complete update for the moment. Pictures in a couple of days, then updates on the latest PET scan, once I have news.

book project

2008-04-19T15:13:00.000-07:00

I’ve decided to try to put together a book about my cancer experience, mostly comprised of my e-mail updates and blog entries. I thought it might be interesting to include things from you, my followers, supporters, cheering section, caretakers.

I have a few thoughts/questions:

If my experience has somehow changed your life, in any way that you’d like to define “change,” can you write about it? Or make an audio recording and send it to me?

If my experience has had an effect on someone I’m not aware of/in touch with, can you pass the above request on to them?

I saved all of the e-mails I received that had anything to do with what was going on, beginning the day I went to the doctor. Is it OK with you if I include text from yours (if applicable)? Do you want me to show you what I have first?

For all requests, I’m happy to maintain anonymity if you prefer. Let me know if I can use
1-your full info (TJ Bigman, husband)
2-your first name and relation to me (TJ, husband)
3-your relationship to me but no name (husband)
4-no potentially identifying info (an acquaintance)

If you’ve got nothing to say, well, then say nothing :)

Please e-mail or snail mail me by mid-June. (If there are a few that come in later, that’s OK, but I’d like to have this piece pretty well solidified before I start work again on July 28.)

Leave a comment if you need my contact info.

Many thanks in advance.

5K

2008-04-06T10:40:00.000-07:00

I ran my first post-cancer run this morning.

I was in no way ready for it, but that's just how it goes sometimes.

It was fabulous.

At one point, kinda early on, I was a bit overwhelmed at the emotional significance that I've attached to it. I ran in this same event last year - the last 5K I ran before cancer - so I felt it to be fitting somehow to make it the first run after.

The same as last year, the course was hilly, so I was slower than I would have liked to be. I'm a flat-terrain runner :)

My goals for my first ever 5K, which was in the neighborhood of 5 years ago were:
1-finish it without walking (run the whole time)
2-don't come in last
3-don't die

I met all three goals for that race. I didn't quite meet them this time. At the water station (which we passed twice), I walked fast while drinking, in an effort to get more from the cup to the inside of my mouth. At one other point, there was a small hill that I just couldn't run up, so I walked. It was only about 10 steps. Honestly, if I had walked the whole race the same way that I walked those three times, I might have finished faster.

The time on the clock when I pulled in was 39:30. We can shave 20-30 seconds off of that for time lost at the gun, as I wasn't on the front line.

A funny story about that: there was a woman with an elementary-aged child near my friend and I, who ran together, as we were all crowded around waiting to go. As the "motion" started to make its way back to where we were, people started jogging, and I heard, "Oh! These people are fast! These are real runners! Look out! We'll wait for them to go!" I thought this was especially hilarious because I was back where she was because the "fast, real runners" were up front.

This is the first time that I've run a 2-lap race that I was slow enough to be finishing lap 1 while someone else finished the race. (It was at the 20-minute-mark.) That was kinda sad. But I didn't get passed by anyone pushing a double stroller this year, so it all evens out...

They had little fruit icee things, but by the time we slow ones pulled in, they were gone :(

In any case, I am super-glad I went. I'm glad my friend went - it was nice to talk while we were running, and I might not have finished if she wasn't there. I was feeling pretty dead at the end of the first lap. I caught a second wind and it was OK, though.

As far as the body and recent issues are concerned: my knees got sore within the first mile. I bitched them out (in my head), and they were OK the rest of the run. They're a little sore now, but not bad.

I felt kind of the same as the last time I went running (really tired, short of breath) for a while, but it burned off, so I was glad about that :)

All-in-all, an excellent way to spend an early Sunday morning :-) I think I'll do another...

hair project 4-3

2008-04-03T08:04:00.001-07:00

OK, here are the most recent hair pics. You can't tell from the pic, but in the front, if I pull the hairs down forward, they almost reach my eyebrows. At this point, it's a little long for spiking, so I've been combing it forward on top, down on the sides. I tried parting it, but that's still not quite happening.

I haven't noticed much difference between now and before it fell out. A little lighter, maybe, a bit thicker, maybe. That's about all.

I did trim the "tail" on the left to even out the back a bit. It was quite a bit longer than the right.

hair project issue...

2008-04-02T22:12:00.001-07:00

I have pics but I can't get them to upload. As soon as I can get them from the computer to this website, you'll see them!

quick update on the doc's appointment

2008-03-24T19:16:00.001-07:00

Well, I forgot my paper with my questions, so I didn't remember to ask them all.

I wear sunscreen on all uncovered parts whenever I leave the house. Today, I am wearing short sleeves, so I put sunscreen on my arms before leaving work. By the time I got to the doc's, my right arm was sunburned. That kinda answered the sun question. I asked anyway, and he said that it would be best if I wore long sleeves. "Indefinitely?" "For a while." I'm not sure how long that is, and I didn't inquire. So I'm going now to look for one or two long-sleeved shirts (one definitely in white) that I can wear over my short sleeves when I'm outside.

I've been having the weird skin sensitivity lately, like I had during chemo. It's not nearly as bad, but it is noticeable. I asked about that, and he said that he wasn't concerned about it. (The doc's answers aren't great for those of us who like to know "why" -- he's just answering from a "should I be concerned" perspective.)

He listened to my lungs without my request, and he said nothing about them, so I assume they are fine. If I continue to have the same problem with exercising, I'll call.

The swollen node is about the same - everyone agrees - so no action necessary at this time. I should call right away if I notice a change for the worse (no kidding!!).

And I'll have another PET scan 3 months from the previous, so that will be mid-to-late May, the year-mark of when this all started. The end of the school year approaching is raising a bit of anxiety in me. Funny, since the point in the school year had nothing to do with everything that happened. Ahhh, associations.

So that's where it's at right now.

every now and then, it taps me on the shoulder...

2008-03-24T09:26:00.001-07:00

It’s all kind of surreal.

It’s different than denial.

I mean, I know I had cancer.

I remember a lot of it more clearly than I would like to.

Yet it still doesn’t feel real, somehow.

I had an appointment at the radiologist’s this morning, to check on my swollen node. It’s still swollen, but it’s about the same as its been all along. (It was kind of annoying, actually. From the time I got out of my car to the time I got back in was 15 minutes. I could have just called and said, “Yep, I’ve been checking it every day, and it’s still the same.”)

I noticed on my way in and out that the paintings we did at the Day of Art are framed and hanging in the hallway. I could see mine. Mine was a tribute to all of the people who carried me through the journey: medical staff, husband, friends, family. It is not a fabulous painting, but it says what I wanted it to say.

Seeing it made me want to cry. Writing about it makes me want to cry. I can’t entirely pinpoint why, either.

I went running Saturday late afternoon. It was easily the hottest it’s been for an outdoor run for me since before diagnosis, and the sun, while low, was still up. I did my usual 2-mile (my house up to Baseline and back), which I’ve been able to run without walking for quite some time now.

I couldn’t run it.

I ran all the way to Baseline and did a combination walk/run the whole way back. The whole second mile. I was completely out of breath and tired. (Legs felt OK.)

This funky incident (which was most likely a result of me not being used to the weather), had me in tears by the time I cooled down. I was out of breath, which is a problem I haven’t had, which *must* mean there’s something wrong, which *must* mean that the long-dead cancer is causing problems.

Shit.

I wonder if this paranoia ever goes away. I don’t like it.

Well, in any case, I have an appointment with the oncologist this afternoon. Questions I have:

- when do the side effects of the chemo wear off once and for good?
- I love being outside in the sun. As long as I wear sunscreen vigilantly, is the sun something I need to avoid? Are clothes sufficient barriers, or do I need more sunscreen than I thought?
- is the restriction on hot tubs, hot showers, massages, etc. permanent, or was that just during treatment?
- the funky blue veins in my chest are still visible, and the area inside my left collar bone is still slightly swollen. Shouldn’t that have gone away by now?
- please listen to my lungs – I had some issues when I was running over the weekend.

*sigh*

Yeah, if you have the opportunity to miss sharing this adventure, that would be a good thing.

update on the node

2008-03-09T11:25:00.001-07:00

the swollen lymph node (from however long ago) is still swollen but barely. i can still find it 'cause i know where to look, but i wouldn't find it by accident like i did before. i am assuming this is a good sign and that we needn't worry about it any more :)

docs' appointments on the 24th (one in the a.m., one in the p.m.), so i'll have confirmation by then.

the hair project 3-3-08

2008-03-03T19:13:00.000-08:00

Well ... I took my digital camera to school last week and left it there over the weekend, so this month's picture is a couple of days late... Anyway, this is what it's looking like these days. The style is gel-free, though sometimes it needs gel. Don't know why.

swollen node, exercise

2008-02-26T20:27:00.001-08:00

I saw the radiologist yesterday (for an appointment that was scheduled on my last day of radiation). He checked out my still-swollen lymph node, measured it, said he wants to see me back in 4 weeks, and if it gets any bigger, they'll have to biopsy it. I knew that already. So on March 24, I'm seeing both docs: one before school and one after school. *sigh*

I recently joined 24 Hour Fitness. It has been fabulous getting back to the gym, lifting weights, not running alongside traffic, etc. My membership package came with four training sessions. I'm looking forward to them :)

If you ever want to get me a gift, they sell gift cards :)

I still need to pick a 5K to run in March. We'll see about that...

Hair picture in a few days!

I'm 3 for 3, baby!

2008-02-21T16:48:00.000-08:00

I had a doctor's appointment this afternoon (that I managed not to miss...), at which I got the results of Monday's PET scan.

It's negative!!

I'm not terribly surprised, but with this little swollen node thing going on in my neck, there was a larger-than-average possibility that it would have not turned out so well...

Speaking of that node ... the doc asked if I'm OK with it, which I am (for now). He said that if it's really a problem for me, that he would be OK with taking it out, but that if I'm not freaking out, that a wait-and-see approach would be fine.

I see the radiologist on Monday. The oncologist said to be sure to get his opinion about it.

That's all the health news on this front. Another hair picture in a week or so - it's getting long!

ONE TRY!!!!!

2008-02-18T09:11:00.000-08:00

I had a PET scan this morning. They take a while (total time at the office without waiting = 2 hours), but they don't hurt or have side effects or anything.

But they do require an IV :(

This is the third PET scan I've had. The other two, just like the chemo, always required three attempts before the IV was in and working.

I told the guy this morning that if he got it in one try, he'd be my best friend.

He did :) It is the first IV I've gotten since the ER that went in without lots of poking and digging.

Results on Thursday.

cold...

2008-02-13T21:35:00.000-08:00

OK, not so happy to have a cold now. Yes yes, it's still better than cancer (my goodness!), but I'm ready to be healthy again...

quick update

2008-02-09T11:38:00.000-08:00

I woke up significantly congested this morning - I've never been happier to have a cold.

The lymph node is still swollen but less so.

Good news :)

thoughts from the doc

2008-02-08T17:10:00.000-08:00

I called this morning for an appointment. They had a 1:00 appointment with the nurse available. I took it.

The nurse agreed that my left neck lymph node was swollen and inquired about sore throats, nasal drainage and the like. I've had some of each every morning when I woke up, but it clears up during the day. (I've been chugging Emergen-C, gargling with salt water, and using the NetiPot in an effort to stave this thing off ... getting enough sleep might help, too...) She said that was likely the reason for the swelling and she'd get me an antibiotic. OK. She left, and I waited ... and waited ... and waited ...

When she finally came back, she said the doc was going to squeeze me in, if I didn't mind waiting. No problem with waiting. I was grateful.

He came in, checked out my neck and armpits, asked the same questions that the nurse had asked. He said that his recommendation would be to come back in two weeks. He said it's probably from the cold I'm fighting off, but that we need to be cautious given my history. He said he could do a biopsy right then, but he wouldn't recommend it. If it *is* cancer again, two weeks isn't going to make a difference. If it's not cancer again, in two weeks, it'll be gone. So I have an appointment for two weeks from yesterday. If it gets any bigger, I should call right away.

I also will be having a PET scan (which was in the works anyway) and should have the results of that at the same appointment.

So that's where it's at. Here's to it all being just a cold .....

shit...

2008-02-07T21:09:00.000-08:00

I had a doc's appointment today. I missed it because I was way late because there was a crazy amount of traffic.

Normally, this wouldn't bother me too much, 'cause it's just a follow-up appointment. They tend to be really short and not very interesting.

However, I noticed earlier today that on the left side of my neck, the lymph node is swollen.

Originally, my make-up appointment was scheduled for Wednesday next week, but I'm going to see about going in tomorrow.

I'm scared...

the hair project 2-1-08

2008-02-01T22:05:00.000-08:00

Here's what my hair is lookin' like today, February 1. I have that weird little tail thing going on, and around my ears feels unkept, but otherwise, it's doing well :)

I'm not noticing any lingering side effects of radiation, and the side effects of chemo feel like they are mostly gone. Funny, here we are, 2.5 months after chemo ended, and there are still bits of lingering side effects.

I suppose that as long as there are no cancer cells, I can deal with minor lingering side effects :)

I'm DONE!!!

2008-01-21T12:42:00.001-08:00

I have officially completed my treatment for Hodgkins!!!

Both techs gave me a big hug this morning before I left, which was sweet :)

I cried tears of joy and relief on the way out.

It's funny - in some ways, I'm feeling like it will be nice to have my life back. In other ways, I feel like I've mostly had my life back since chemo ended, and the rest of what's been going on has just been sewn into my days. Getting up so early was certainly not fun, but there are WAY worse things that could have been necessary.

In any case, all I have now are follow-up appointments and periodic scans. I have an appointment with the oncologist in two weeks, one with the radiologist in a month, then I'll only see one of them on a monthly basis (probably the oncologist, or rotating).

Life is good.

And with that, there is much more to be done today. Hooray for 3-day weekends :)

side effects

2008-01-19T14:27:00.001-08:00

Well, I was told that the two most likely short-term side effects from the radiation would be fatigue and a sore throat. I haven't had any fatigue yet (yaye!), but about a week ago, swallowing food started to become uncomfortable, kind of like how it feels when you swallow something too big and it's kind of stuck. But I learned quickly that if I took small bites, chewed a lot, and stayed relaxed, most of the time, it wasn't too bad.

I saw the radiologist on Monday after my treatment. He asked how swallowing was. I told him it was a little uncomfortable but not too bad. He said it would get worse as treatment progressed, which makes sense. Here's the kicker:

It's getting better. In the last few days, I have had almost no discomfort in swallowing at all :) I suppose it is something that I could be adapting to, but I don't see that as a likely answer. Of course, the radiation not having the same effect is not a likely answer, either, so I don't know. Regardless of why, I've enjoyed feeling normal :)

And aside from being sleepy from getting up an hour and a half earlier than I'm used to every day, fatigue hasn't been an issue. I've been able to do all the things I normally do, except that my evenings are cut short so I can try to go to sleep early so as not to be tired.

There it is :) I don't suspect one more treatment is going to produce a landslide of side effects, so I think I'm pretty much in the clear :) :)

With the way things have gone in the past, I kind of am nervous about what's going on that I can't feel, but I'm not going to worry about it. There's not anything I can do about it anyway — just stay in touch with what things feel like and report them as needed.

Monday is my last radiation :) :)

I got my appointment moved to 7 a.m. (from 5:50), so I can sleep in (haha). Be on the lookout for one happy post on Monday...

It's been 8 months...

2008-01-13T20:55:00.001-08:00

...since the last time I worked out at a gym. Almost to the day. (Last gym visit was May 14 - I had a session with my trainer.)

I went this afternoon :)

Of course, I can't lift anything close to what I used to. Except for dips, I didn't do any upper body on more than 20 pounds. I can still leg press more than my weight, which pleased me, even though it's over 100 pounds less than where I left off. I also was able to do leg lefts with my legs straight (bent knees is much easier) for a set and a half, which made me happy; I was mentally prepared not to be able to lift those straight legs even once.

Now, I didn't do many exercises to failure, so I might have been able to lift more, but at this point, I just want to start to get back into a routine and get my muscles used to doing some work ... without being sore for 3 days.

I also did some elliptical, which completely kicked my ass. I was a little surprised about that, since I have been running some, but it is what it is. I haven't done any running since last weekend, which would contribute, too.

In any case, I worked out for about an hour (maybe a little less) and was exhausted and happy at the end. :)

Related: I don't actually have a gym membership now. I used a "try our gym free for a few days" pass at LA Fitness. It's good through Tuesday. Then I'll do the same at 24Hour Fitness. Then at another gym. Until I've tried out all the ones in the area that I'd like to try. Then I'll join one. If you have a recommendation (for or against) any gyms in the east Valley, lay 'em out there!

"you're looking better"

2008-01-10T20:22:00.000-08:00

It's amazing what 1/4" of hair will do.

That's probably the amount that my hair has grown since the last band concert we had before Christmas. It's the only thing about me (as far as I can tell) that looks different than it did a month ago. Yet five people came up to me before yesterday's rehearsal and during break to say how good I was looking and they were glad to see/hear that I was feeling well.

It was nice, but it was kinda weird...

over the hump!

2008-01-09T20:00:00.001-08:00

Quick radiation update:

9 treatments done
8 to go
no noticeable side effects so far!

new radiation tmt

2008-01-08T06:20:00.000-08:00

I went for radiation this morning. It was the first day of the second leg of treatment. The first treatments were really short: a little shot to the front, a little shot to the back, and I was done. I was laying on the table for maybe 2 minutes, plus another 2-3 to get set up.

The rest of these are much longer. Including the time it took to get set up, I was there for about 25 minutes. The machine moved all around and zapped me at different angles. The tech explained that I would hear some clicking, and not to be alarmed about it.

Basically, the machine is a big circle on an arm. The arm enables it to rotate around the table. in the middle of the circle, there is a rectangle. Inside the rectangle, there are lots and lots of little tiny grey pieces (of what?). It kinda looks like one of those novelty toys with all the pins, where people tend to stick their face or hands in and it maintains the shape.

The little grey pieces move to make holes to let the radiation out. The clicking is the pieces moving. When the machine was in my field of vision, I was watching it — it was pretty neat, and it changed every few seconds. The tech said it would change about 200 times during my treatment.

I decided earlier that while I was laying there, I would visualize myself running a 5K. This would help time go faster, give my mind something to do, put positive things in my head, and maybe help me run ;-) It's the first time I've ever run a 5K in 20 minutes :-D

Eight down, nine to go...

misc goings-on

2008-01-03T17:10:00.000-08:00

I've been having some chest pain for a while now, similar to that which was previously associated with the shots I got after chemo to keep my white blood cell counts up.

It has persisted though the shots have not. Last time I saw the doc, he said to call if it got worse. Over the weekend, it got worse. It was almost constant (as opposed to very intermittent) and was more intense. Now, don't get me wrong — it has never been excessively painful, even at its increased intensity (I've never taken even an Advil for it, much less anything stronger) — but it's not supposed to be there at all. If I knew it was nothing serious and would go away eventually, I wouldn't think about it at all. But I don't know that yet.

So I went in to see him yesterday. He asked a bunch of questions (same ones he's asked before) and basically ruled out a cardiac problem. It doesn't bother me any more or less when I exercise, and I'm not short of breath or anything like that. I'm set up for a bunch of tests to guess-and-check, starting with a bone scan tomorrow. I don't know what they entail or how long they are, but I'll know soon...

Of course, it hasn't bothered me at all for the last three days. If it stays away, I'm going to see about maybe cancelling the second and third tests — they're not until the 21st. I see the doc again next week on Wednesday, so I'll perhaps have more info then.

In other health news, all bodily systems are up and running as they should be (or at least close to normal) as of about a week and a half ago. Body is healing from the chemo and isn't failing yet from radiation.

Five radiation treatments done, twelve to go.

They're changing my treatments on Tuesday. My time changes Monday and Tuesday (to accommodate my work schedule). I've been going at 8 a.m. Monday I go at 6:20 (!!). Tuesday onward I go at 5:50. Yes, a.m. Pretty heinous. I haven't decided yet if I'm going to leave there (well before 6:15) and go to work, go home and take a nap, or go to the gym. They all have perks and drawbacks that I am too lazy to type right now.

Oh, and there's a possible kink in the hair project: I am going to a wedding in the end of March. Depending on what it looks like by then, I may be wanting a trim. We'll see.

Earlier this week, I was able to jog two miles without walking. This is the first time since May that I've been able to do that. I'm looking forward to being back up to 5K stamina and am hoping/planning to run a 5K in March or April. I think that's a reasonable goal...

the hair project 1-1-08

2008-01-01T10:48:00.001-08:00

HAPPY NEW YEAR!!!

I am growing my hair out in 08 - see what it looks like without being cut. (How will I know if it has the "chemo curl" if I keep it at #2 all the way around?)

(Anyone who knows me well or remembers the last time I grew out my hair knows that this might not actually happen...)

I will post a pic on or near the first of every month, for anyone who would like to watch my hair grow :-P

Here is the first:

reclaiming my body

2007-12-28T22:57:00.000-08:00

Before all this cancer crap, I was in good physical condition, was the slimmest I've been my whole life, was eating well without a lot of effort (took a lot of effort to get there, though!!!). I had recently achieved my personal goal of a 5K (3.1 miles) in less than half an hour.

Three weeks in the hospital, followed by chemotherapy, didn't allow for my usual workout routine (5 days/week, 1 day/week with a trainer). While I have been able to do a bit of exercise in various ways through the course of things, my body just ain't what it was. While frustrating, this is certainly to be expected, given the circumstances.

I've been starting to eat better again (will jump completely back on that wagon once there aren't any more holiday parties), and I've been jogging/walking almost with regularity.

Today, for the first time since May, I was able to jog two miles without walking. It felt fabulous :) :) I feel like I am taking my body back. The cancer tried to get it, the meds did a number on it, and it's my turn again. There is a significant chance that the radiation will take its turn, but I'm not worried about that now. If it happens, I'll deal with it.

In the mean time, I am reclaiming my body, and it feels wonderful :)