Quick Update! (Message 9 of 21)

11 April 2011

W/ Marianne & her daughter, Lindsay running the
Caesar Rodney half-marathon, March 27

One week to go . . . until the Boston Marathon, then right after that, my first chemotherapy treatment. Yesterday I went for a bike ride with someone who is going through chemo and she was a total inspiration to me. She also validated my inability to sleep well at night as being typical of pre-chemo jitters. (I did manage a full night's sleep Saturday night! Wow, what a difference that makes!) She said as soon as treatment begins, I'll be able to sleep again. I can only hope! One good night here & there is better than nothing, but I've never been good at sleep deprivation, just ask my kids!

This week's "training" is all about getting a lot of rest & eating smart... the hardest week of training because I'm supposed to do very little in the way of running. The idea is to be a well-rested, well nourished bundle of energy at the starting line!  

I had the bone scan on Friday, which was time consuming but painless. Much more pleasant than an MRI. I napped while listening to my iPod! The device is called a Gamma Camera and, at my request (after signing some release forms) I came away with a CD with jpg images of my skeleton to enlarge and print for the windows at Halloween! Unfortunately, I have to wait a week for those results. I am told there is very little chance there is anything amiss in the bones, but that's what they said about there being a positive lymph node, too, so my optimism has just a faint edge to it.

I am very excited for Boston! Thanks for all of the good wishes! If you want to see how I am doing (or did, after the fact) you can go here and look for me by name or bib number 19416. Or, if you're really into it, you can register for the  Athlete Alert by texting RUNNER to 345678. On race day, you will receive an alert when I pass the 10K, half-marathon and 30K marks and then when I finish. To sign up, or for more information,  go here.  

And because chemo starts the day after I get back (April 20th) -- and Easter break at the Catholic college where I work  is right after that -- after Friday I won't be back at work for a week & a half! Not that I prefer chemotherapy to work, but if ya gotta start chemo, might as well have some time off!  

Enjoy the beautiful weather!

Love,

Diane

Progress (Message 8 of 21)

3 April 2011
Happy April! 

For some reason I managed to not be involved in -- or even hear anything about -- an April Fool's joke on Friday. I had a quiet day plowing though some projects at work... the only full day of work uninterrupted by a medical-related appointment or phone call since all of this began. When I got up from my desk for the regular 3pm cuppa Joe, I had to smile at the normalcy of it all.

Things did move along at a steady clip all week, though. I had an appointment with Dr. David Mintzer of Penn Medicine on Wednesday as a second-opinion oncologist and liked him so much that I switched doctors on the spot. I went to him on the recommendation of an oncologist at Sloan Kettering who has written about the tendency to overtreat early-stage breast cancer patients, and who said Dr. Mintzer was his mentor.  I figured if there was a chance chemo really wasn't right for me, this would be the doctor who would tell me that. 

I went in completely on edge. I was surprised at how nervous I was. I guess I was already prepared mentally for taking the chemo road and was concerned he might give me that totally different opinion and then I'd have a difficult decision to make. But, his opinion was essentially the same as that of the fist oncologist and his reasoning and explanations were far less fear-inducing and alarmist. I know this won't be easy, but now I really do feel like I can manage it and have at least *some* control over my life during chemotherapy.  His manner, his office staff and the homey setting were all so much more comfortable to me, and his slightly different approach to the treatment suited me better, so I made the switch. 

I also met with my surgeon for the last time until after chemo. She looked over her "work of art" and gave me the all-clear to do whatever I want to, so that's fantastic! I went to swim practice this morning, which was kind of a struggle with a still-weak right arm & chest/shoulder muscles, but at least I know it's not hurting anything. Putting up with the frustration and working through it will make me stronger more quickly than taking it easy would and I like having this small thing to be able to track progress with. 

Next week the appointments & phone calls continue... the highlight being Friday at the Nuclear Medicine department of Bryn Mawr Hospital. I am scheduled to be injected with more radioactive stuff, this time to light up my skeleton for a bone scan. I will request a picture to put on the window at Halloween. The bone scan will rule out any signs of bone metastases, which would totally change my treatment. 

Up next:

Monday or Tuesday - PCP appointment for referrals

Thursday - Nutritionist

Friday - Bone scan followed by wig appointment

On April 19th we arrive home from Boston and treatment begins on the 20th.

Have a great week!

Diane

What will YOU be doing 10 years from now? (Message 7 of 21)

26 Mar 2011

You guys have given me lots of great company and stuff to eat & read & research -- keeping me very well occupied -- while I waited for the test results from the lab in CA. THANKS!!  The results arrived early!

These results give me enough info (as interpreted by my oncologist, John Devlin) to be able to weigh the pros & cons of having chemotherapy before the radiation therapy and hormone therapy that would follow. Dr. Devlin answered all of my questions and surprised me a couple of times with facts that I was completely unaware of. In the end it looks like I will be going the whole nine yards with this... As Phran says, I'll be killing a nasty, diseased fly with a Howitzer! Why would I do that, right? Well, because it's possible I could miss if I only use a fly swatter, and unlike with flies, you only get to take aim one time and then sit back and see if you got it. This is my chance to do whatever I can.

My Oncotype test says there is a 90% chance I WON'T HAVE an incurable recurrence in 10 years without any chemotherapy. Those are GREAT ODDS!  But, that's a 10% chance I *could* have that recurrence. With chemo that chance is cut in half... 5%. There are never any guarantees, but I think that if there were a recurrence and I hadn't done the chemo, I would wonder why not. What good reason do I have to take the chance?

I like the Howitzer analogy Phran gave me. In my doctor's estimation, someone in my physical condition, with no health issues, could withstand the Howitzer rampage. "You would tolerate this VERY well," he said. For him, someone who works with this stuff every day, it's a no-brainer. Why *wouldn't* I want to poison my body for a few weeks in order to have the best possible chances at a longer, healthier future? Well, let's see... maybe because I am worried about any long-term health issues that could come of this... you know the risk:benefit ratio? He tried his best to assure me that all of the health problems are short-term and that no lasting issues will come from either of the drugs in the TC cocktail he is recommending. According to him, I would have to be on chemo for a couple of years to start seeing pulmonary or cardiac issues. Still.  You know I've been eating as much organic, mostly vegetarian food as possible for years, My only refillable Rx is naproxin and I am loathe to take meds prophylactically. So, I sort of need to be convinced that chemo isn't toxic in a long-term way.

So, I will get a second opinion from a doctor at Penn, recommended (independently) by Dr. Devlin and a friend-of-a-friend-of-a-friend oncologist from Sloan Kettering who has written about the over-treatment of women with early stage breast cancer.  In the mean time I will be scheduling my first chemo treatment, which I can cancel if this other opinion convinces me otherwise. There will be four treatments, 28 days apart, for a total of 12 weeks.

So here's what's up next:

Monday: Scheduling appointments for second opinion & chemotherapy
April 18: Boston Marathon
April 20: First chemo treatment (tentative)

Thanks for all of your input, thoughts, jokes, stories and especially your company and your caring. I've been asked several times if I would like information on a local support group. So far, I really haven't felt the need.

Love,
Diane

Pathology Report, Part I-B (Message 6 of 21)

17 Mar 2011
Hi,

Another week... where does the time go? ; ) I've had a couple of long walks in the nice weather at Ridley Creek. I am reading Lance Armstrong's book "It's Not About the Bike" and learning lots of interesting stuff. I didn't know that there are different chemo cocktails and that (for example) one greatly reduces lung capacity for life. The alternative cocktail makes you unimaginably sick, but that's temporary and when it's done, you've still got your lungs...

Today's visit with the surgeon continued along familiar lines.... the news was just a leeeetle bit "off" what I expected to hear... not terrible (I am SOO lucky!), but not as good as I was thinking it could be. This time though, I could see the humor in it... as if the Universe, or God(s), or whatever couldn't resist this elbow to the ribs and snickering.

Remember that I said the tumor had spread just a bit into one of the sentinel nodes. It was not enough to exclude me from the gene mapping assay, but it really, technically is NOT node negative. How could it be, right? Right. Therefore, technically, my cancer was not Stage 1 as we first thought. Until not long ago, this was considered Stage 2 cancer. 

Nowadays though, there is a special Stage 1-B just for cases like mine that are technically not node negative, but have such a very tiny amount of tumor in one node, that it is just just just *barely* node positive. Node positive cancer cannot be Stage 1, but it really isn't as bad as Stage 2, therefore it get's to be Stage 1-B.  ("Why not 1-A," you ask?  Good question! It's on my list for the next appointment!)

So, I can't help but think the joke's on me... I always *have* to record every second and every tenth of a mile of every workout to be sure I'm not fudging anything, and I am regularly teased about it. ("We did, Diane? We rode 29.6 miles? Not 30? It really felt like 30....")  

Ok, I do feel the need here to disclose the fact that the tumor was not 1.3cm but was actually 1.6cm... in case those 3mm mean anything to anybody.  But, I get it already. It really just doesn't make any difference at all what you call it, does it? It is what it is and we'll treat it the way it needs to be treated.

So, next steps:

1. I have no restrictions on exercise at this point, EXCEPT I can't get in a pool for a whole nother week. GRRR!! At today's appointment she removed a bunch of fluid from under the arm where the lymph nodes were taken out and instantly relieved some pretty severe pain I was having. (Yesterday was the worst day for pain by far since surgery, and that just didn't seem right to me!). She said it could happen again so no swimming while there is a chance she'll have to stick another needle in there. Infection and all of that....

2. I will meet with my radiation oncologist, Dr. Carella in Newtown Square next Thursday to discuss treatment. My surgeon recommends beginning radiation the day after Boston. She sees no reason to start it a few days before Boston (her earliest recommendation based on my healing pace at this point). I might as well go to Boston, give my skin an extra three or four days to heal, and then start it when I get back. 

3. My Oncotype DX assay from CA won't be ready for almost two more weeks, so I will meet with my Medical Oncologist, Dr. John Devlin, on April 1st (cool!) to discuss the results of that and whether I need chemo. If I do, that will set back radiation because chemo should come first. And if that's the case, Boston may not be a run for me after all. If I need chemo I don't want to put it off. But we will just have to wait and see about that.

Dr. Barrio said about the Caesar Rodney half-marathon, "why not?" About the Columbia (MD) olympic distance triathlon in May, she said, "I don't think so," but we'll see... it could happen, if I can find a shirt to wear that the sun can't penetrate... maybe I'll make something out of wet suit fabric... Those & Boston are all I am signed up for so far this year.

I'm back at work tomorrow! Have a great weekend and enjoy the lovely weather!

Much love to all,

Diane 

Pathology Report, Part I (Message 5 of 21)

11 Mar 2011
Happy Friday! (again).  Time flies, eh? (No.)  

I am recovering nicely from surgery. I have very little pain, but don't ask me to describe it on a scale of one-to-ten. I am nearly drug free at this point. The PT exercises are easy and much like the upper body stretches you do at the end of spin class. I have almost a full range of motion again and the subconscious desire to "protect" the right side from "unnecessary movement" has almost disappeared. That's the good news.

The lymph node pathology report came back yesterday afternoon. Four lymph nodes were identified as sentinel, meaning that anything traveling the path from my tumor to the rest of my body would pass through these nodes first. No cancer in these nodes would mean the cancer was isolated to my right breast only, so these nodes were removed to examine. (Actually, a fifth, tiny node was also removed because it was stuck to one of the four.) In one of those nodes was a tiny amount (a few millimeters) of tumor, my doctor said. 

This is where it gets confusing for me because we had one course of treatment to follow if I were node negative, and another to follow if I were node positive. Dr. Barrio says that the amount of tumor in the one node is so small that this is still considered a node negative result. However, we will be doing the long course (6 week) of full-breast radiation treatment instead of the localized, one-week treatment option for node negative patients. That works for me. I certainly don't want to skimp if there is a chance we need to to more. And, we were not going to engage an oncologist to discuss chemo options unless I were node positive, but now I will see an oncologist. I'm sure you can see how my over-thinking brain would short circuit over this.

So, whether or not I receive chemotherapy as well as radiation therapy is still to be determined. Because my result was technically "node negative," the tumor still gets the trip to Redwood City for gene mapping. That test is only for invasive cancer that is ER+ and node negative. Here's a video that explains it. It includes such educational phrases as "...gene specific florescent dye-labeled bio-probes." But don't worry; most of it is in English!

The info from this assay will be extremely useful for the oncologist to determine if chemotherapy would have any impact on my chances for recurrence.  (Only 4 out of 100 women receiving chemo  with early stage invasive breast cancer actually have recurrence rates that are better than women who don't receive chemo!)

Next up: 

1) Surgery follow-up appointment with Dr. Barrio next Thursday at noon.

2) Meeting with oncologist when results come back from CA (about 10 days). 

3) Radiation therapy begins when my skin is completely healed from the surgery -- about four weeks. With skin as painfully fair as mine (nearly transparent!), she wants to be sure we start out on the healthiest possible foot. Six weeks of sunburn will be a new record for me.

As usual I have you all to thank for the distractions and perspective that keep me on a positive keel. I was really counting on getting some peace of mind from that report, and  I about crumpled when that didn't happen.   


More than just empathy and sympathy, you guys came through with actual useful things to consider and concrete reminders of reasons to feel positive again. And with stories and such that make me laugh. Good, good stuff. Saying "thanks" is so inadequate. 

Love,

Diane

It's a good thing surgery is day after tomorrow, cause I'm about out of wine (Message 4 of 21)

7 Mar 2011
Hello,

Today was very busy with pre-op appointments, some shopping and getting stuff ready around here for me to be lazy(er) for a few days. I managed to get an hour at the Y this evening too.

One of the appointments was with my surgeon, Dr. Barrio, who gave me some more information about the pathology report from the biopsy. I'm glad I didn't know there was more info coming from that! It was all positive information about the type of tumor. 

Because of recent research (published in JAMA ... scroll down that page, click on an abstract and geek out on the numbers!), they are changing their policy about taking lymph nodes and I get to be among the first recipients of this less invasive procedure, since the new policy doesn't officially go into effect for two weeks. Basically, it just means recovery time from the surgery will be less and the "morbidity" that results very minor. (This new policy is already being used at Sloan Kettering and the Mayo Clinic.)

My tumor is going to be tested more than high school students.  It gets to go to California to undergo the Oncotype DX gene expression profile. This test predicts the likelihood of chemotherapy being a good option for my particular disease. Dr. Barrio was confident enough that I will not need chemotherapy to actually *say* that, but this should be done anyway, to be sure. At any rate, radiation will start almost right away. There are two options for that, but I won't go into it all here. Hit me up for more info if you really want to know.

Tomorrow I will have my arm measured for a clinical study about lymphedima that I will participate in, and get the last two pre-op items checked off the list, finish the shopping and pack. Surgery is scheduled for 10am Wednesday and expected to last 90 minutes. I will be released Thursday morning after breakfast and a conversation with the occupational therapist. Recovery time is "1-2 weeks," but we'll see about that.

Thanks again for all of the phone calls, text messages, great vibes, hugs & just hanging out with me. This nightmare would have been so much worse without you to talk to.

Love,

Diane

TGI Friday -- Except in Doctorland! (Message 3 of 21)

4 Mar 2011
Hi there,

Not going to leave you hanging through a long story:  My MRI results are good!

Fridays are never good days for medical tests because you have to wait through the weekend for the results. I had to do that last weekend so *this* week I had the test yesterday. Newsflash: Really, A medical test on Thursday at 6pm might as well be Friday. I was supposed to get a call with results this morning but they didn't come. At noon I called the office to learn that on Fridays they close at noon. 

Oh, the agony! I made more calls. 

My advocate, who is also off today, had someone covering her (whom I met at the time of my biopsy), and she heard of my two-thousand phone calls and stepped in to call me back. Bottom line: There are no other issues in either breast, so the plan for surgery on Wednesday is not going to change. She said the doctor will call me (from a conference in Texas) later today.

I think my blood pressure and Charlie-Sheen-Index have just dropped by half.

Thanks for all the good vibes, phone calls & messages. So good to have you to talk to.

Diane