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.

Second go-round (Message 15 of 21)

12 May 2011
Greetings,

The second treatment went off yesterday much like the first one. Last time I said, "One down, three to go," but I learned my lesson! It won't be, "Two down, two to go" until the day before my third treatment! 

I have to admit, I didn't go into this second rep as gung-ho to "get it done" as I did the first time, but I left with my "pharmacy" bag well stocked for all of the side effects I suffered last time, plus some I didn't, just in case, and I'm feeling well-prepared and more optimistic that this time will go better than the last. I know that chemo is a cumulative experience, that side effects build over the course of the four treatments, so I'm not kidding myself. But I think that without the sunburn rash at the outset and the mid-way hospital stay, even if things aren't wonderful, maybe I at least won't be dramatically begging to be put out of my misery!

I made this little line drawing that Dr. Mintzer drew for me yesterday explaining how the Neulasta shot will change things during this treatment. The first time around, my white blood cell count took a dive a few days before I got the resulting infection that caused the fever and put me in the hospital. This time around, the Neulasta shot won't prevent the dive, but will bring it right back up, presumably before any infection can take hold. My white blood cell count started off this time lower than it did last time (it's that cumulative effect), but was still well within the acceptable range, so thankfully my treatment was not stalled and no changes are recommended.

WHITE BLOOD CELL TRACK

Neulasta has (of course) its own set of side effects, for which my "pharmacy" bag is prepared, but to me a day or three of lower back pain, bone pain &/or jaw pain has to be better than that hospital stay was. (Knock on wood!)

So here's what's up over the next three weeks:

Today:     Neulasta shot (And training to administer shots after the last two treatments myself at home.)
Saturday: Swim practice! I wonder if I remember how...  followed by Graduation at work
May 22:   Columbia triathon. I had to give it up, but I will be there cheering and tailgating
June 1:    Chemo #3

Dressed & ready for Staff Development Day!

Dr. Mintzer was disappointed that I had to give up Columbia. His voice dropped as he said, "You will sign up for next year?" I promised I would, and that I am still training for the mind-body "zen" sense of well-being, not to mention the energy boost. He wanted to know what I've been doing for training. I almost felt guilty for the light load over the past three weeks, but hey! I was sunburned and I had a three-day hospital stay! What does he want from me? How many Coaches can a person take??  At any rate, after I pointed out that racing is a more intense day than a training day, he agreed that, even though he thought the shot would do the trick, and even though I am using SPF 110 sunscreen, it was probably best to just play it safe, especially since Columbia is a couple of hours away from home. 

I kept this one by the front door

I am attaching some funny wig pictures, but truthfully, serious hair wigs like the purple one are just amazingly uncomfortable. I have three of those and I can only stand them for about 5 hours before I am driven insane and my scalp is gasping for breath. The goofy wigs are great (except Marge has got to be the worst wig ever!), but not at all practical for (most) work days. So, it's scarfs and hats for me now. Tons better. 

Hope you are well and enjoying the gobs of great spring weather that we've been (over)due! 

Was going to wear Raggedy Ann to a staff picnic, but it  was canceled. : (

Love,

Diane

Put Down that Razor! (Message 14 of 21)

6 May 2011
Good morning,

Dr. Mintzer told me to expect to bid my hair farewell temporarily about two weeks after my first treatment. Like clockwork, yesterday -- 15 days in -- the shower drain was clogged with the stuff. As short as it is, I have a lot of it, so I expect to be shedding for a couple more days before it's all gone.

I have already had a few queries about whether Dave, Robin & Eben are planning to shave their heads, too. Phran's imagery was "the four croquet balls!" Others have suggested that they might also go hairless in solidarity. To this I feel I must weigh in, because I do feel somewhat strongly about it.

I love that some are wanting to support me this way. But you see, I LIKE HAIR. I didn't want to lose mine. I don't want my treatment to cause anyone else to lose theirs!! Very few people can be hot and bald at the same time, and they wisely choose to be bald. You go, Vince & Lenny! For the rest of us, I instead challenge you to GROW your hair the entire time I am in treatment, until mine starts growing again (sometime in late July I suspect), and then if you want to, cut it off and donate it to Locks of Love.

If you choose to do nothing at all with your hair, please know that you have already done so much for me in the years we've known each other, and especially in these past couple of months. Your friendship, love and support has been more than I could have ever asked for or even imagined. I already have plenty of evidence that you are here for me.

With much love,
Diane

A "garden variety" chemo reaction (Message 13 of 21)

4 May 2011
Hi,

My excitement over having very few chemo side effects was waaaay too premature. As it turns out the worst of it started just when I thought I would be feeling better from any side effects. I'm not sure how I missed that detail.

The day I saw Dr Mintzer about the sunburn rash, exactly one week after treatment, he probed me with questions about side effects. I happily said that other than the rash, I just had a couple of mouth sores that day but otherwise, everything was good. He said to call if anything happened, and especially if I discovered a temperature over 101, to call immediately, 24/7.

Thursday I had a few more sores, but I knew it was a chemo rash I had read about and it wasn't very severe, so I barely mentioned it. I picked up my brother & sister in law, Dave & Ellie, from the airport. We had a nice evening, but I noticed during dinner I probably should have made something less spicy. The next day I was feeling those sores even more, but we headed for a taqueria. (I highly recommend the mole at Taqueria Michoacana!) We thoroughly enjoyed ourselves and I didn't really suffer. That's the only way I can remember when the sores became a nightmare. It was when I woke up Saturday morning.

Saturday was Eben's birthday and I got up ready to get lunch organized and the cake iced and decorated to his specifications. Very fun to have him involved. Problem was, my mouth was completely on fire. I used a baking soda + salt solution in very warm water as a rinse and that would hold it off for about 15 minutes at a time.I also was pretty chilly. It was a cool, cloudy day, so I didn't think much of the chill.

By the end of the day we had had Birthday Lunch and gone to see the Phila Union play and beat by one point the San José Earthquakes on a goal by the player Eben wanted to get the goal. Yay! My "lunch" was a slice of cake & some icecream in a blender with extra strawberries and almond milk. DELICIOUS!! but it ended up being my entire caloric intake for Saturday. At the game I shivered under five layers of clothing and a sleeping bag while everyone else sat in shirtsleeves. My brother kept feeling my forehead and asking "how do you feel?" I answered, "like crap," but when anyone else asked I just said, "good!  How much longer?"  I really wasn't going to ruin Eben's birthday. Two years ago I got hit by a car on my bike on his birthday. Really, at what point does this start to look like attention-seeking behavior?

When I got home I finally took my temp. It was 102. I called my doc's service and was told to go to the ER and call back with my white blood cell count. I got a spot in the ER at about 8pm and was admitted at about 1am and didn't check out until 2pm today (Tuesday).  I've never been in a hospital that long, not even to have a baby.

My white blood cell count was very low, a condition called neutropenia. It had caused the mouth sores as well and the fever was a response to some infection that needed to be treated. Blood and urine cultures were taken to try to discover the cause of the infection,  and antibiotics were started immediately. (Both blood and urine were ruled out after 48 hours as causes of infection.) An antiviral was started but then discontinued when a virus was ruled out. The sores are called mucositis, not caused by a virus.  The lack of calories & caffeine, and the pain in my mouth probably caused the temple-to-temple headache. 

In order to treat the neutropenia itself plus all of the symptoms, I had a huge bunch of drugs coursing through the IV tube, through shots and orally. Orally, and via shots, Tylenol to reduce the fever, Neupogen for the nutropenia, and a blood thinner shot a couple of times to prevent blood clots (I was in on the cardiac floor!). Via IV, two varieties of antibiotic, and two alternating varieties of anti nausea meds for  the nausea all of this was starting to cause about a day into it. And then the pain meds: The first was Dilaudid but it wore off way before it was time for more. They switched me to morphine for almost 24 hours, but that started making me nauseous and not helping the headache, so we gave that up and went to my old friend Percocet.  I also received an oral anesthetic for my mouth called "Magic Mouthwash." I am not kidding, that's what it's called.

By Monday morning I had given up trying to eat anything. The "magic mouthwash" was also nauseating by that time. All I had to eat for all of Monday was one vanilla Ensure. By the end of the day though, I was being told that things were looking up. My white blood cell count was rebounding. I could probably go home tomorrow. It took until almost 8pm for me to really believe it. They could see it in the results but it took about 4 more hours for me to feel it after that. I knew I was recovering when Ellie made me laugh so hard my cheeks hurt, but my mouth did not.  I had a good night, and I woke up feeling really good. I ate some breakfast and a good lunch and then  I was given my walking papers. I came home with plenty of energy and I am back at work tomorrow.

The day after my next treatment, I will get a prophylactic shot of Nulasta, which is a longer-lasting version of the Nuepogen. I was just reading up on why this isn't standard issue for chemo patients and the reason is because there are some side effects to it that you might not want to line yourself up for if you aren't one of the 40% who will become neutropenic after chemotherapy.

I was visited by a team of three doctors during my stay, an oncologist at Bryn Mawr who was in touch with my Penn oncologist and two infectious blood docs. The oncologist told me on Sunday when I was feeling just god-awful (but not yet at my all-time low),  "This is just a garden variety reaction to chemotherapy, nothing to worry about... once your white blood cells recover all of these symptoms will go away." She was right! They did. It's amazing. At the time I was ready to be put out of my misery. 36 hours later I was good as new.

It was Dave & Ellie's first visit in ages, and Eben's birthday. What a drag. Well, it wasn't dull.

Have a fun Cinco de Mayo! I might have to find another Taqueria to try out.

Love,

Diane

Attitude Adjustment (Message 12 of 21)

Out wig shopping 4/25. The scarf hides/protects the sunburn!

27 April 2011
Hi there...

Wow! Summer really just *happened* all of a sudden, didn't it? Looking at the weather guessing, I can see that we are in for some slightly cooler & rainy days coming right up, but these past few have been June-ish. It's exciting! Dave & the guys got the screens on the porch up! Yay! I'm loving this summer already, especially knowing that we FINALLY have central air. Aaahhhhhh....

Warm, humid weather suits me more now than in days gone by, and now * especially* since I am sporting a new (though temporary) short-short haircut. If not  for the fact that I got a pretty severe sunburn in Boston, I would be spending all of my non-working hours enjoying the great outside.

But there lies the painful rub. This ridiculous sunburn, which was certainly destined to blister & peel, has morphed into "sun poisoning," and landed me back at the oncologist's office today for evaluation. What we have concluded is that I have had a rare allergic reaction to the sun, complements of chemotherapy. A certain level of photosensitivity is quite common and you probably were already aware of the cancer patient's need to watch the sun exposure. In my case, there was a reaction to *already-existing* sun damage. Dr. Mintzer has not seen this before, but since my rash is confined to areas that were sunburned, this is his conclusion. If I were allergic to either of my chemo drugs, the rash would be everywhere, not just on freshly sun-damaged skin. There are two implication to this:

1) Certainly I should avoid sunburn, which I already knew. I blew it at Boston, but neither of us knew that any bad behavior prior to my first treatment would be an issue.

2) I should actually avoid the sun in general. Not only will I burn more easily, but I will break out in this debilitating rash anyplace that even glances at the sun. Unless I am perfecto with the sunscreen, I can expect pain & suffering after a day of fun in the sun.

Here's what has happened. The skin with the worst of the sunburn broke out in a rash first. That was on my right shoulder. After a couple of days, it reached its painful peak and my neck & chest began to break out. Now, two days later, the neck & chest are at their worst and the shoulder is free of the rash, though still painful obviously, until it goes through the whole peeling & healing thing. And now my right forearm and the back of one leg is breaking out. These areas were only slightly pink after the marathon. I would not have included those two areas in my inventory of "Boston sunburn" until now. 

The only question left is why didn't my face break out? As I knock on wood and appreciate my luck, I can only imagine how horrible it would have been to have eyes swollen shut and a painful mouth on top of everything else. In fact (still knocking on wood here), if not for the sun, I would say chemotherapy is awesome for the complexion improvements! My face is smoother than ever! 

So, I've had to adjust my attitude again. I was devastated to realize yesterday that everything I love to do in the summer is just going to have to take a year off. As usual, after wallowing in self-pity for a few hours, I have a new plan. I'll have to turn up the a/c and get those winter projects done.

Love,

Diane

One Down, Three to Go (Message 11 of 21)

20 April 2011
Hi, just a quick note to let you know how it all went down...

My appointment was for 9am, and I was finished at about 1:30 I think. After some saline & pre-meds to control side effects, they took the actual chemo real easy this first time, and I guess they will next time too. The Taxotere (the "T" in the TC cocktail) can cause an allergic reaction and so they administer it slowly at first to look evidence of that.  

I don't know why they call it a "cocktail," because they do not mix the beverages in the IV bags. First you get the Taxotere and then the Cytoxan. If I drank the vodka and then drank the kahlua, it would not be a Black Russian cocktail. It would be a couple of shooters. 

I had no bad reaction. At all. The premeds did their job and the only side effect I can tell so far is a bit of a bad taste in my mouth. I headed to the pool for between 1200 and 1500 meters (lost count, even in the 50 meter pool!), got Frida to the dog park for a LOVELY day, picked up Robin at a friend's, headed to the grocery store and then came home and sipped *a little* wine on the deck with Peggy before dinner! Busy day, but "staying active" is what the doctor ordered, and who am I to question the doctor's orders?

Other side effects could show up over the next few days, but within less than I week I should be in "recovery" mode (recovering my blood counts) so that by the end of the 21 days I'm ready to do it all over again.

Next up:

Hair cut:  Friday, (w/ free shipping to Locks of Love. What a deal!)

Chemo #2:  May 11 at 11am. 

Columbia Olympic Distance Triathlon: May 22

Dr. Mentzer:  "You can definitely go for a podium spot."

Me:  "Well, then chemotherapy would have to make me a *better* athlete than I already am, 'cause in my best shape, that would be very unlikely!"

So far, I have not noticed ANY performance enhancing effects of the TC cocktail. I will keep you posted on that.

Love,

Diane

Cancer Takes A Holiday! (Message 10 of 21)

19 April 2011

Greetings from Boston,

Someone must have paid off the weather gods because it rained every day we were here except race day. We had near-perfect running weather. Thanks for the text messages & email messages & phone calls. It was nice to have you here in spirit.

It was so much fun to be on vacation with Coach & Marianne and Margaret & Vince. Good eats, sight-seeing, shopping and parties in Coach & Marianne's hotel room. (Sorry for the crumbs on your side of the bed, Coach!). We laughed so hard that our faces hurt and Marianne & I were trying to think about what (other than Lenny's blue shorts) triggered that. Ah, it must have been the wine! Marianne &  were jealous that we had a race to run and couldn't stay out and party with the rest of them. They took Dave to a bar and in his words, "shined a bright light in my eyes" and got our whole story out of him. I think they like Dave better than me now. 

Margaret picked the perfect location in Back Bay for our stay. The Newbury Guest House is two blocks from packet pickup and shopping at the convention center, right across the street from the Wired Puppy coffee shop, and a few doors down from a nice market. Of course all around us were restaurants and bars. The day before the race everyone was out hustling around; the day after hobbling like 90 year olds. It was probably a mile back from the finishing area, which was gruesome!

Race day was windy and freezing. Wearing a pair of Eben's old sweats, two sweatshirts & and garbage bag over my race singlet & shorts, I huddled with Marianne & Dave & Coach after Margaret & Vince took off for a run, waiting in line for a bus to the starting line for over an hour. At one point we saw Bart Yasso and I wanted to bolt out of line and go give him a hug, but I didn't do it, darnit. 

Boston has no public restrooms (even in places like Dunkin Donuts) and most of the porta pots are locked except the ones right by the buses and by the time we were there, we just wanted to get on the bus and get going! It was a long ride to Hopkinton for the race start. Traffic was so heavy that a couple of guys asked the driver to let them off to pee in the woods while we were on the highway! They got off, ran up to the woods, did their business, ran back along the shoulder until they got back to us, and the driver opened the door to a cheering load of dummies who still had to pee.

When we arrived in Hopkinton, the buses were taking so long to park that runners were bailing off in droves from every bus to flee to the woods to pee. Marianne & I were among them. 

We really didn't have to wait all that long for the race start. We nearly lost each other checking our bags. When we finally reconnected, Marianne said, "thank God!! Margaret would have KILLED me if I had lost you already!" I started the race still wearing one of the sweatshirts, but before the first mile was up, both of us had shed all of our layers, down to our singlets and shorts. I realized that, oops, I had forgotten the sunscreen. What a beautiful day!!

I really don't think Boston is all that difficult of a course. It is a net-downhill course (more down than up), and "Heartbreak Hill" is named for an instance during one race in which the local favorite was passed on the course's biggest hill, breaking everyone's heart, not because it is necessarily a killer hill. What makes it bad is all of the downhill travel up to that point. Too hard on the downhills and the uphill kills. Yesterday the winner broke the WORLD RECORD for marathons but was denied the title because the Boston course is net-downhill. 

For me, though, it was hard! There is a LOT to be said for getting all of your training done, not just the long runs. I didn't get enough of my Yasso 800s done, nor my interval workouts. I got the miles in, but not the workouts.I paid for it. But the first half actually went really well. We started out slowly to warm up and gradually, each mile, picked up the pace just a bit. 

Along the way, we saw a woman wearing a tshirt that said, "My greatest PR: Beating Cancer" or something like that. She was bald, wearing a ball cap. We pulled up along side her and I told her what an inspiration she was and that I was starting chemo on Wednesday. She told her story ... she's having her last chemotherapy treatment now, then radiation, surgery and then more chemo, and how she hadn't run since October but that she could do this, one way or another. I had tears in my eyes. After we talked for a while she said, "I don't even know you, but I can't believe cancer thinks it can try to mess with you."  We said our goodbyes and good lucks. I am absolutely sure she finished, even though I didn't ask her name, and couldn't remember her bib number to look her up at the end.

Marianne & I were doing well... pacing ourselves very well and enjoying things. But then I had to make a pit stop.

When I had to make the stop and *wait* for the porta pot, I told Marianne to run ahead, or at least walk, and I would catch her. But she waited. She was worried that we wouldn't be able to find each other again. So, we had a few minutes pick up in order to recover our overall pace. I timed the stop to be right after we crossed the 10k split mat, in the hopes that we could make up the time before the next spit so that you guys wouldn't notice!! I don't think it worked, because it wasn't long after that that I had a really bad spell so early in the race that I was afraid everything was blown. So much for breaking 4 hours. (I knew going in that my body still hadn't recovered from the effects of percocet, which I really don't need to go into here!)

Marianne & I decided to stay together, which was really nice, but I felt some regret when I could see that she would be going faster if I weren't suffering. We decided to just take one mile at a time and walk through the water stops. She would get to the stop before me and I would catch her a few seconds later. 

The hills were sort of energizing for me, because they weren't nearly as bad as I had read about, but my quads were NOT happy about it. Except for the gut cramping, which after mile 16 or so I had learned to live with, I was ok, but I was certainly feeling those quads. At the top, I had my second wind and was feeling pretty good. At this point it was my turn to help out Marianne, who was having some muscle cramping. Finally, I got to help out the woman who helped me prepare for and have a great day at Ironman, and who didn't run off when I was suffering a few miles back!  

We finished together. Our time wasn't good, but we had a good time! (For the most part!).  Certainly the long weekend in Boston was just what the doctor ordered (literally). The timing was just perfect. A forced holiday for cancer. Now it's nice to have a recovery week while I start this next challenge. As Marianne says, "This is just your next challenge and you'll meet it like you do the others." I doubt  it'll be as much fun, although I'm going to try to have some fun with it. I think the Marge Simpson wig I ordered for Staff Development Day (among other events) should be waiting for me at home.

Love,

Diane

P.S..  Sorry that some of you got this twice... I copied in the Tri-Dawg list.