Maybe there is more?

Well, now that I have posted all of those email messages from last year, maybe I'll just keep on posting and updating because, what do you know? It doesn't end just because the treatments are done. There's some weird stuff that happens to your head after some time has gone by and it might be worth mentioning.

For example, I had kind of a panic attack a few weeks ago that I was thinking was just a strange, one-time thing, but then it happened again the other day when I posted all of those email messages. The first time it happened, it was this sort of a-ha! moment in which I suddenly realized that what I had last year wasn't just a bad case of the flu. Sheesh! I had cancer?! From the diagnosis all the way through treatment, I was so busy and very well-distracted that I successfully avoided the "big picture." So, when it hit me, I was sort of amused at having my mind bent like that. But it was more disturbing when it happened again on Friday, and I wonder if it has anything to do with the upcoming anniversary of my diagnosis.

I sort of approached cancer treatment the way I approached Ironman.  If you think about the entire Ironman event all at once, you'll freak out! Swim a couple of miles, cycle over a hundred miles and THEN run a marathon? Are you crazy?  But if you create a training plan that you have confidence in -- and realize that you have to be flexible with that plan because stuff happens -- you only have to focus on what needs to be done today, and you'll be fine.  When race day comes, you'll be ready both physically & mentally. So, during cancer treatments I kept that modified "training log" I wrote about. I just did what was right in front of me and didn't think much about the enormity of it. Not until it was all over.

But now, after the fact, I have had flash-backs. I see the whole thing all at once. And I can't believe I did all that. After Ironman, thinking back on the day was also overwhelming. The crucial difference is that Ironman is something I wanted to do. Something I have souvenirs from. I even got the tattoo. Cancer treatment is something I was forced to do against my will. It is possibly -- obviously -- the very last thing I ever would have wanted to do. For some reason there is no sense of accomplishment. Maybe if there were, I could stop having these panic attacks. But thoughts like that would feel arrogant. I wince when someone says, "you beat cancer!" Shhhhh . . .  I like the idea of challenging myself again in long-distance triathlon, but I have no desire to challenge cancer again with arrogant thoughts. I'm planning to sign up for another Ironman, but I don't ever want to see cancer again. That's the difference.

I know! ha! Maybe if I think of it as, "beating cancer treatment!" that would have the effect I am looking for? Can I be proud of that without feeling arrogant or like I am challenging it to a rematch? Hmmn . . .

"The End!" Yeah! (Message 21 of 21)

2 Sept 2011
TGIF y'all! 

August 29

 Finishing treatments at the beginning of a holiday weekend is probably dangerous, but I plan to take full advantage of the situation. Celebrations started yesterday!

After the final radiation dose, I was handed a "diploma!" So funny! And I was directed to ring the bell three times. Now THAT felt good. Wish I had brought a camera. When I got home there were champagne & flowers waiting for me. First toast at home, and then I brought the celebration to work. It was only fitting. Everyone at work has been so accommodating and generous this spring & summer, and it was the academic summer that provided the book ends for my post-surgery treatments. I wore a wig for almost the first time at graduation last spring and now, as classes are starting again, I have enough hair to lose the hats & scarves if I want to. Sometimes I do. Sometimes I still like to wear them. 

I hope you don't mind if I ask one more favor!   I haven't been able to participate in a triathlon since Ironman a year ago. My first "triathlon" of this season turned out to be a mudrun, which was fun and all of that, but it wasn't a triathlon! I am registered with my team for a huge party-of-the-decade triathlon at Lums Pond, DE on September 11. If you have any sway at ALL with the weather-gods, PLEASE put a word in. I really don't think it is too much to ask to be able to race ONCE with my team this summer ...  a triathlon, with the swim AND the bike AND the run all in there.  Thank you for petitioning!

Okay, so here's my last "what's next" update:

* Next Tue. - Dr. appt to get a referral to a medical ophthalmologist for a baseline eye exam to track potential changes during the five-year course of tamoxifen, which begins now. †

(September 11 - Diamondman sprint distance triathlon)

* Two weeks - Followup with radiation oncologist (skin check)

(Sept 24 - Make-A-Wish olympic distance triathlon, Bethany Beach, DE ... still looking for a room mate!)

* October - Followup with medical oncologist 

* December - Followup with surgeon

And that's IT!  I'm done! 

I believe this is the 20th message I've sent since all of this began the first of March. While the mailing list grew some as time went on, most of you have been there talking me down, through & around it all for the entire six months.  I am so blessed to have so many generous people on my side. I hope you never have to slog through something like this, but if you do I will be there the whole way, you can count on it.

Love,

Diane

† Call me if you ever need a recommendation for a doctor of any sort. It's possible I will have met with one this year!

Almost Done! (Message 20 of 21)

23 Aug 2011

Hi there,


I'm in the home stretch! Today I got two MORE tattoos for the final few radiation treatments, which I think end a week from Friday. The last 8 or 9 treatments are targeted right on the sight of the surgery. Today was my last full-breast treatment. Over the course of the treatments, I had none of the skin problems that a lot of people complain about, just a 7x7 inch square, slightly "sunburned," pink area that defines the field being treated, and one tiny break in the skin by my collar bone that certain shirts aggravated. Absolutely no big deal. The only thing that bothered me was the relentless fatigue that began about three weeks in. I have had spurts of motivation since then, usually early in the week after having the weekend "off" of treatments, but nothing to really write home about. There were a couple of days where I would lie down on the porch for a "nap" after work and sleep through a very noisy thunderstorm, wake up some hours later because I was cold, and go to bed! I learned pretty quickly that I needed to do the nap-until-morning thing on Thursday to avoid needing to sleep all weekend. 


I did get to do Triathlon-Turned-Mudrun a couple of Sundays ago. The weather cancelled the swim & the bike, so I have yet to do my first triathlon this year! I am holding out hope for better luck on Sept. 11. However, this past weekend, I did get to participate in the Philadelphia Livestrong Challenge. Many of you contributed and sent me supportive messages and I could feel your good vibes all weekend long! It was really a ton of fun, I met lots of very interesting people and I heard some amazing stories. It was a very meaningful weekend to me and reminded me (again) how lucky I am to already be able to do something like this. On top of that, my times for the 10k run on Saturday and on the 45 mile bike ride on Sunday were great confidence-boosters. Each week I continue to win back some of that lost fitness. It is a huge mood boost when I am tired as a dog to know that I *am* improving.

Saturday, before the 10k

Team Slow Spoke, after the ride on Sunday

I am including some pictures from the weekend. You'll see that the run on Saturday took place in the fog & light drizzle. The sun DID come out for the party afterwards. It was perfect! The ride on Sunday was very hilly and we had some rain off and on. Lucky for me I hooked up with a fun group of cyclists, mostly from upstate New York, wearing Livestrong Jerseys with a great looking logo & the team name "Slow Spoke." They were NOT slow in my book! They turned out to ride a very challenging but do-able pace for me and we just had a ton of fun. They invited me to their team's tent after the race briefly, before the rain showed up. The photo from the ride on Sunday is of me and all but one of the guys I rode with. Do you recognize that guy in the dark glasses in the third photo? We finished a few minutes before him, but only because he rode 70 miles and we rode 45!! What a kick it was to cheer him through the finish line!

We beat Lance (but he rode 25 miles farther!)

Then I went home and had a nice Sunday afternoon nap on the porch while the rain poured down in buckets! ... but I didn't have to sleep until morning! Dinner and a movie with a friend was way more enticing, even if it mean that I am having a heck of a time staying awake this week! 


Thanks again for all of your contributions and good wishes. I will write again in a couple of weeks when I can finally write "The End."


Love,
Diane

Just a quick note . . . (Message 19 of 21)

3 Aug 2011
Hi,

I received a couple of phone calls & text messages this week suggesting I pen a quick update; it's "not like you" to clam up and folks might might think something's wrong if I don't say otherwise!

Well, today I am six weeks post-chemo. Two weeks after each treatment I had additional hair loss, and for the last one I lost quite a bit of my eyelashes and more of my eyebrows and the small amount of regrowth on my head. Now, four weeks after that, the eyelash/eyebrow situation hasn't improved, but the kind of sparse hair that I have on my head is almost long enough to pinch between my fingers! I'm taking photos every month (an inch a month, said Dr. M!) and today's was the first. Not attractive at all, but progress! [can't find that photo; must have deleted it! 2/3/12]  I am looking forward to a covering thick enough to hide my bone-white scalp, maybe in a couple more months!

Me & Coach cheering on the Tri-Dawgs at Lake Placid

I have no lingering symptoms from the last chemo. I am slowly regaining some fitness.  I had my 11th (out of 32) radiation therapy treatments this morning. I had four treatments the first & second week; this week and every week until I'm finished I will have five, except for Labor Day. RT is going very very well. Yesterday (Aug 1) I finally got slammed with the "fatigue" I was told I could expect in the third week, and what an odd beast that is! It's not like being tired from working out or from staying up too late the night before. It's like a heavy blanket and it comes on suddenly. The first hit was right after my treatment yesterday morning as I was driving home. I went for a walk when I got home and when I got back to the house the fatigue was gone! I took advantage and had a good workout, and then around 3:30 it happened again! This time I did try to nap, but after a sleepless hour, I was good to go again! So strange! Hey, if that's all I have to deal with, I'm happy! 

Just for perspective:  In radiation therapy, I am on the table getting treatment for maybe four minutes each weekday morning. I am getting "two fields" of therapy, that is, the machine (I think it's called a 2DXRT ... two dimensional xray therapy) aims a beam for a few seconds to one targeted spot, and then it moves from that side over me so that it is aiming the beam from the other side of my body for a few seconds. That's it. When I arrived one day this week, for the first time there was a patient ahead of me. Her appointment ran over by 20 minutes because of the complicated nature of her *20* FIELDS!!  Can I tell you how lucky I feel with my two fields? I really got off easy. 

So things are rolling right along. I am NOT wishing for a quick end to summer. Even though I am not on vacation all summer long, I like the easier pace. But when summer ends, so will all of this, so I've got something to be grateful for as the fall semester rush begins both at work and at home.

Love,

Diane

Cancer Treatment: Out with the old, in with the new (Message 18 of 21)

15 July 2011
Hello! 

I hope this message finds you well and enjoying summer even if you have to work (like me)! 

Well, Wednesday this week was three weeks since my final chemo. This time I had no major side-effects except for a short summer cold with a three-day fever that never went as high as the time I wound up in the hospital. Recovery from a lingering breathing/coughing issue has been slow and frustrating for running, but other than that, I am very gratefully, healthy.

Since the treatments were three weeks apart, Wednesday was a great milestone. It's funny that with all the various complaints that the body comes up with during chemotherapy, the one that I hated the most was NOT the sores in my mouth or the fatigue, the bone & joint pain, or even the fact that I couldn't be out in the sun (although that rates REALLY high on my "ugh" list). The thing I hated the most was that metallic taste in my mouth, along with a generally dry mouth, that would kick in about two days after a treatment and last for about a week & a half.  It made most things taste wrong and some things downright inedible. I hope to never have to deal with that again. Life without enjoying food is just not living. This week I am celebrating the return to my diet of red wine and various forms of cooked tomatoes like tomato based soups and sauces. Pizza!! Life is so good.

(Side note in case, god(s) forbid you are ever in a similar situation: I had been putting mint & lime juice in my tap water in order to somewhat successfully hide the taste of the metals that are naturally in water, and during the last treatment I discovered that the Mojito is even better, since it also acts as a mood-enhancer.)

Yesterday I got tattooed in prep for radiation therapy, which begins on Monday and lasts a little over six weeks, M-F mornings for about 20 minutes a pop. They really are REAL tattoos. I thought the term was being used loosely, as in "temporary tattoo," but no. I now have three additional permanent freckles... one that actually looks like a mole! I have one freckle about three inches below each armpit and the third, bigger (mole-sized) dot is right over my sternum. Ouch, that one did hurt! Connecting these three black dots creates a boundary for the radiation beams. 

I am told that radiation therapy is a walk in the park compared to everything else, so really the only downside is that it's hard to get away for any kind of vacation. Other than missing a trip to blazing-hot Arizona when Robin moves into college, I'm okay with that, if just a bit stir-crazy. Getting away to Lake Placid next weekend to cheer on some friends at Ironman will be a GREAT break, and then October (after the initial "rush" of the beginning semester at work has passed) will be a good time for a short vacation.

This week I biked three times, including my first bike commute to work since last summer. I had forgotten how much fun it is to ride in traffic at rush hour! I'm going to try to add a second bike-commute next week. I also ran two short races this week, on Wednesday & Thursday. Every time I pull on the running shoes or get on the bike I feel a leeeetle stronger than the last time. Last night a running club friend/genius/inspiration/icon : ) couldn't count the number of times he's had to recover from scratch and reminded me to be grateful that I still CAN run at all, much less feel improvement each time, and to be patient with the slow process. Conversations like that have been sustaining and motivating throughout all of this.  I truly am blessed to have had you all to lean on & learn from.

Love,

Diane

Time to Celebrate! (Message 17 of 21)

23 June 2011

Happy Summer!

I hauled myself in for the last (knock on wood) drip from He** yesterday and here we go again... 

Robin's high school graduation day, June 20

once more, with gusto! 

I arrived bearing brownies for the nursing staff and it was a sort of surreal celebratory session.  I left feeling really, really good! I KNOW the next three weeks will not be any better than the previous three rounds, but for some reason, it doesn't matter. It's DONE! I am done with that!

Dr. Mintzer and I talked lots of numbers: percentages, risk/benefit ratios, monitoring stats over the course of 10 years, etc... fun stuff (really!) but the bottom line was "you can expect to be cured and that there will be no late-effects (long-term side effects)..." This is the way I will proceed, "I am cured." There was a story this morning on NPR discussing late effects and how cancer survivors are having to live with some pretty ugly stuff. Back in the day, survival was not as frequent, and thus the overarching goal... late effects be damned. The drugs were more dangerous to pulmonary, heart and other vital organ function and triggered other cancers. We've come a long way, thankfully. I am very lucky.

I have to say, the last three weeks looks, on paper, like it went relatively well. Some bone pain early on, then joint, ligament and tendon ("connective tissue") pain, lower back pain and insomnia for the duration. Nothing that would put me in the hospital, or even make me physically ill (usually) but just stuff that slowly beats a person down, turns them into a whiner, and makes them fat & sluggish and completely free of any patience. (Yes, fat. Don't argue with me! On the plus side -- no pun intended -- I'll have no problem finding the necessary belly fat to inject the Neulasta later this morning.) In a nutshell, I was a joy to be around. Lucky for you, you don't have to be around me all that much! My family, on the other hand, is ready to send me away. Good thing we're in the home stretch.

Jerome explained it to me for the hundredth time and I finally get why no two treatment after-effects are alike and why it took until the third round to effect the connective tissue. I don't know what exactly to expect over the next three weeks -- what's left to be attacked that escaped the first three rounds -- but I *do* know that after that I can start rebuilding the muscle & strength I've lost and I am really looking forward to that. Excited about it, in fact!! I am putting together a "starting from scratch -- or before -- training plan." 

After chemotherapy, I kicked off my first day of Round Four with a short run with Eben in the heat & humidity. Was terrible for Eben, poor guy, who is unused to that sort of punishment, but I had a great run and am NOT sore today (except my lower back, but whatever). For the first time in 2+ weeks I am not walking around like an old woman. After that, we had a five-star grilling fiesta at our neighbor's house to kick off Summer! I feel like I have a LOT to celebrate so I didn't hold back. Summer! Bring it ON!

Up next for me are a series of appointments related to genetic testing for any hereditary factors in this (which could lead to more crap I don't want to think about right now) and upcoming radiation therapy. I'll be in touch, though maybe not as frequently via mass-email. "Thanks so much!" is an unbelievably inadequate thing to say.  You have been such a source of strength for me. You can't possibly know the difference you have made. The cards, flowers, food, text messages, email messages, invitation to fun, detracting events  -- all of it -- that STILL comes out of the blue has kept me comforted and replenished and (reasonably) sane. Everyone tells me how positive I have been. You just have to look in the mirror to see why.  Quite fittingly, I've heard Bill Withers' Lean on Me on WXPN a few times recently. You'll never have to question where I'll be when you need it.  

Lean on me

When you're not strong

And I'll be your friend

I'll help you carry on

For it won't be long

'Til I'm going to need

Somebody to lean on ... 

... If there's a load

You have to bear

That you can't carry

I'm right up the road

I'll share you load

If you just call me

Much love, 

Diane

NOW I can say "half-way!" (Message 16 of 21)

1 June 2011

Hi again!

Hot enough for you? I feel like a queen, sitting here in A/C set between 78 & 85 degrees (depending on time of day). For those last hold outs, IT'S WORTH IT!! 

Today was Chemotherapy #3, kicking off a Round Three that my Doc tells me could be even better than Round Two. I would be fine with a duplicate. Days one & two were a bit unpleasant with some early side effects (brief morning nausea, headache), but by Saturday & Sunday I was feeling good. Monday & Tuesday of that first week were the worst. (A few mouth sores, fatigue, mild skin rash.) I don't know if you remember the line drawing in last month's email of Dr. Mintzer's description of what would happen with the white blood cells, but it pretty much went just like that, only the brief dip came a couple of days early. By Wednesday -- just one week after treatment day -- I was just fine for the entire rest of the cycle! The metallic taste in my mouth lingered a bit longer, as did a lower-key, annoying-but-not-terrible skin rash, but only by a day or two. 

Me & Tricia at the sunny Columbia tri, May 22

That next Sunday was the Columbia,MD olympic distance triathlon that I had to give up, and I was almost wishing I had held out for it... until the day came and I realized the sun alone would have done me in. It was a fun day, though, cheering for the team. Nice to spend the day with the Tri-Dawgs, and watch them have a good day. 

I got to pick up the activity level quite a bit and it really helped with the fatigue. It's a catch-22... If I can prevent myself sleeping for three hours after work, I can get to the pool or out for a run in the evening, get a better night's sleep, and boost the next day's energy. Sleeping too much in the evening put's the kabosh on that! There are only so many hours in the day. So, I've learned that NOT SKIPPING a lunch-time 45 minute siesta makes the evening workout more likely. The more of that I did, the more I was able to do. 

Team mate Steph's son Ian, Lenny & Moi at swim practice

By the end of round two, I spent every day doing something fun. I got to feel the Tri-Dawg love on Saturday when I decided to give my scalp some air and not wear a swim cap. That was tough, but it would have been horrifying any place else. Thanks to the Dawgs, I had the guts to take it off at the pool at the Y on Tuesday. 

And, thanks to my friend Jerome for organizing it, I was able to get out for a 43 mile ride with 8 friends Sunday morning before the sun got too hot. Dr. M picked my brain and read my log* about that, asking about the route and commenting on how flat it was... "Good!" I swear he cracks me up. [Turns out he's actually a cyclist himself and shortly after saw him for a followup after my last treatment, he made a trip to Italy for a multi-day cycling tour!]   He's the best! He was so glad to see daily workouts again, after the fist go-round's debacle. 

Last time, I filled my pharmacy bag with ammo for everything that hit me the first time. But there was one additional thing I wasn't ready for, even though Dr. M told me it would happen. He said, "When things calm down and you're feeling good, it's all going to hit you, so don't be surprised when it happens. It's perfectly normal." So, I had a melt down. I went mental over the holiday weekend, over reacting to stuff and crying about EVERYTHING.  Jeromne & Dr. M said pretty much the same thing:  "What you're going through is Big. It's not going to kill you (probably), but it did take away some of life as you know it. It's forced you to live in a way you wouldn't have chosen and it all happened really fast. You hadn't had time to get mad before now."  Lots of people face terrible depression when stuff like this happens. I know many of you are facing similar situations and now I know -- even though I already knew you were strong -- how much stronger you are than I realized before.

Well, I think I'm prepared if that happens again. I think I'll be able to tell myself "calm down, this will pass," because it did. I also think it was anxiety-induced, over "looking forward" to the next treatment. Right before a treatment when I'm feeling great, there's nothing to do but wait for the coming drip that will start it all over again. Now that I've had the treatment, I can busy myself dealing with the side effects! Twisted, I know.

Okay! Next up:

Tomorrow  ... Neulasta shot at noon (self-administered!) to boost infection-fighting, hard working white blood cells!

Also tomorrow ... Set up appointments with the radiation oncologist for treatments -- which start a couple of weeks after my last chemo -- and get the radiation beams all set up for that,  Radiation shouldn't be too big of a deal. 20 min. a day, five days a week for 6 weeks.

May 21 ... make brownies to give the nursing staff at Chemo #4

May 22 .... LAST CHEMO TREATMENT!!  Tell the chemo nurses the brownies are "medicinal," and ask them to save one for Dr. M.

Hope that if you like really hot weather, you're very happy! Welcome to last summer. For the rest of us, STAY COOL and drink lots of recovery beverages.

Love,

Diane


*I've been keeping a modified version of a triathlon training log that helps me keep track of how I feel each day, side effects, what meds I take for that, how well that's working, what I can eat, etc. . .  plus my workouts and such.