I was diagnosed with triple-negative breast cancer on March 23, 2010. I kept my friends and family updated on my treatment journey via a series of e-mails from the "Kathy Maeglin Breast Cancer News Network." Many of them enjoyed reading my updates, so I'm sharing them here with anyone who may be interested. If you're reading this because you or a loved one has cancer, keep the faith. You can "can" cancer!
Here's the latest from the Kathy Maeglin Breast Cancer News Network:
We met with the surgeon late yesterday afternoon. After reviewing my pathology reports, images and examining me, he said the best, state-of-the-art plan for my cancer would be chemo first, then surgery, then radiation. The chemo will attack the cancer anywhere it may be in my system, and it will shrink the tumor, which may reduce the amount of my breast that needs to be removed. This whole process will take about 6 or 7 months. I'll go in today for a number of standard tests, and hopefully get a chest MRI this week. I'll see the oncologist asap. It was after 6 by the time we were done with the surgeon, so too late to make the oncologist appointment.
My surgeon is Dr. Thomas Schmidt with the Breast Care Center of Indiana (affiliated with St. Vincent Hospital), and my oncologist is Dr. George Sledge with the Indiana University Simon Cancer Center. These were the doctors that A.J.'s colleagues at Lilly recommended, so I believe I'm getting the best care possible in Indy.
Please feel free to let me know if you have any questions.
I had some bloodwork and chest X-rays done today, and I'll be having an upper-body MRI tomorrow. I'll be meeting with the oncologist, Dr. Sledge, next Tuesday, March 30. My chemo should begin soon after that, since my surgeon, Dr. Schmidt, said this is an aggressive tumor. Adios golden locks! Now would be a good time to sell your L'Oreal stock. ;-)
Some of you have asked about the staging, grading and prognosis. Dr. Schmidt said he doesn't like to do staging and grading anymore, since every woman's cancer is different, and he considers those rankings to be too general and outdated in this age of biomarkers. He also didn't give us a prognosis, but I'm going to ask the oncologist, Dr. Sledge, if he wants to give us one. A.J. said that based on what he knows so far, he would say I have a better than even chance of surviving at least 10 years.
Some other questions/answers:
The 6-to-7-month time frame refers to everything: chemo, surgery and radiation.
Is it ER/PR negative? Yes
What about HER-2? They didn't have that report yet.
My Ki-67 test was high, which indicates it's aggressive.
Do they think the cancer made it past the breast? The lymph node they biopsied was clear, so that's good, and the surgeon said he would be surprised if it has spread to any other organs yet.
Are they thinking by doing chemo first they'll be able to do a lumpectomy? Yes.
I've answered all of these questions to the best of my knowledge, and since I'm a little stressed out, it's possible I may have misunderstood something. But I think this info is pretty accurate, and if not, I'm sure A.J. will let you know!
Thank you all for your kind offers of support and assistance. I have the best network of family and friends in the world!!!
Love & hugs,
We met with the oncologist, Dr. George Sledge, today. He said I have triple-negative breast cancer, which means my ER and PR hormone receptors are both negative, and my HER2 status is negative. This means therapies designed to target those things cannot be used in my treatment, so we have to rely on chemotherapy, surgery and radiation. About 15% of breast cancer patients are triple-negative.
I will begin chemo next Tuesday. The bad news is that I have a fast-growing type of cancer. The good news is that this type of cancer normally responds well to chemo. I will have dose-dense chemo, which means I'll get it once every two weeks for a total of four treatments. The chemo drugs they'll be using in this first round are Cytoxan and Adriamycin. Then I'll have four treatments with the chemo drug Taxol, again once every two weeks. So I should finish chemo about mid July. After that I'll have surgery and radiation. Dr. Sledge said they can't give me any kind of accurate prognosis until after the surgery.
They will monitor my progress closely and change the chemo drugs if my cancer is not responding to the treatment. Again, the goal of doing the chemo first is to kill any cancer cells that may be growing elsewhere in my body, in addition to shrinking the tumor so I may need only a lumpectomy rather than a mastectomy.
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Side effects: Yes, my hair will fall out. I'm meeting with a cranial prosthesis specialist tomorrow. (No, I didn't make that up. That's the term they have to use for "wig" in order to get the insurance to cover it.) Ironically, the wig designer who was recommended to me by a friend of a friend is the same woman the oncologist's nurse recommended. They gave me two prescriptions for anti-nausea medication, and they will administer an anti-nausea drug with the chemo. If these don't work, there are others we can try. As for other side effects, we'll just have to take them as they come. He said it's important for me to remain active as much as possible, but I'll probably be fatigued the first day or two after treatments. I'll have to be very cautious about watching for signs of infection.
If you have any questions, please don't hesitate to ask. This will be a long journey. How difficult it will be remains to be seen. I thank you all for offering to help me through it. Your support has already touched my heart in so many ways. Now let's all get back to the important work of enjoying life.
Love & hugs,
My friend Meredith took me to get my port installed Monday a.m., which took about 5-1/2 hours due to some miscommunication about drawing labs.
My first chemo session was yesterday, and it went well. My niece Kara sat with me for the 3-hour-plus process and was a real trooper, even though she hates needles! I had a little nausea near bedtime, right about when the IV anti-nausea drugs were wearing off. So I took a Compazine before bed and one in the morning, as directed by the nurse, and I've had no nausea today. YEA!!! I feel incredibly lucky and grateful for the meds. Of course, I realize this is just the first week of a 16-week process, and that things could change. But so far, so good. I did feel fatigued later this afternoon and took a nap. That may be a common occurrence on days when I can nap.
I'll go tomorrow to get my new wig cut and styled. Will this mean the end of bad hair days? My hair won't start falling out for a couple more weeks. Next week, I'm going to get a pixie cut. Then I can more easily get used to wearing the wig before I go bald, and maybe enjoy having short hair for the April 17 Race for the Cure. I'll still be walking rather than running. I'm not that dedicated to the cause.
BTW, why did the breast surgeon cross Bra-Cup Road? To get to the other size.
Thanks to all of you for the many cards, gifts and Race for the Cure donations. And special thanks to Helen and Len Mozzi for actually making me some Chemo Crack-ers. They're delicious!
Love & hugs,
I had my second chemo treatment today. When they measured the tumor before my treatment, they found it had shrunk from 3.1 cm to 2 cm -- after just one treatment! A.J. said that by volume, that's more than a 50-percent decrease. YEA!!! This means my cancer is responding very well to the chemo. Woohoo!!!
The side effects have been somewhat troublesome--particularly the nausea a couple of days after the first treatment--but I've been able to treat them all successfully. I know this time that I'll need to take more anti-nausea meds to keep ahead of that.
I got my wig today and have been playing around with curling it. It doesn't look exactly like my old hair, but I'm happy with it. My real hair has begun falling out rapidly, so I'm going to have Kara give me a buzz cut tomorrow night. Just call me Buzzy!
BTW, A.J. gets the laugh this time: He pointed out that if I got a dark-haired wig, I could instantly increase my I.Q. by 10 points. Five points for a red wig. Guess who's not getting any sex this week? ;-)
Special thanks to Kara for taking me to chemo; to Andrea for my fabulous, brightly colored and wonderfully filled chemo bag; to Kris and Jerry for visiting us; Helen for another round of homemade Chemo Crack-ers; Sue for the butterfly print; Myrna for the book; Meredith for the DVD; Oberon for being my daily sounding board; and to all of you who donated to Race for the Cure in my honor. I'm probably forgetting someone, so please forgive me -- I'm a blonde with chemo brain. Double jeopardy!
Thank you all for the love, prayers and support.
Love & hugs,
I had my third chemo treatment yesterday, and my tumor has now shrunk to .75 cm. Woohoo! That's down from the original size of 3.1 cm. The doctor actually had difficulty locating it until I pointed it out.
I had a full week of nausea after my second treatment, so I asked for the good stuff this time -- Emend, an anti-nausea med that my friends Andrea and Louise both recommended. I felt good today, but tomorrow will be the real test, since Day 3 after chemo is usually my worst. I also got a different sleep med that is working better than the first one we tried. I won't bore you with all of the other side effects, but they have been plentiful -- and bearable, with OTC treatments.
Little-known fact: One of my chemo drugs, Cytoxan, is derived from mustard gas. Now I know why the nurse always offers me mayo with my "chemo cocktail."
Special thanks to Kathy Naraghi for making me some beautiful scarves; A.J. for my single-serving smoothie maker; and Helen Mozzi for my chemo care package, which includes a Tinkerbell coloring book. Tinkerbell is my favorite Disney character because she has small boobs and big hips -- just like me! Thanks also to all of you who've sent me cards, both paper and e-cards. I've hung onto all of them to remind me what wonderful people I have in my life.
Riddle: What's the difference between aromatherapy and chemotherapy?
Answer: Aromatherapy stinks good. Chemo just plain stinks. (Groooooooooan!)
Love & hugs,
I finally got to see my "real" doc today, Dr. Sledge. He said my tumor is so small now that "it's not even measurable." Woohoo!!! Even I have trouble locating it. So this is very good news, since it increases the likelihood that any cancer cells that strayed from my breast have been zapped as well.
Today I got my fourth and last dose of the A/C combo (Adriamycin/Cytoxan). The next few days will likely be difficult due to the side effects: nausea, "chemo brain" (mental fogginess) and fatigue. But they put me on Zyprexa about a week ago to battle the nausea, and it has helped. Yes, that's Lilly's blockbuster drug, so we get it for free. (Nice to keep things in the family.) They also gave me samples of an additional anti-nausea drug I can try. So I now have enough drugs to open my own Walgreens. ;-)
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I will have four more chemo treatments with a different drug, Taxol, which has much milder side effects. Then about 4-6 weeks later, I'll have surgery. The tumor is still there and was very tender when he palpated it. So they still need to remove it and check the margins. I think the odds are very good that it will be a lumpectomy. I will still be getting radiation as well, to basically mop up any cancer cells that may be left. Recurrences of triple-negative BC do not respond well to chemo, so that's why they hit it hard with everything they've got the first time around.
Thanks to all of you for the cards and calls and e-mails and prayers -- you're the best!!! Special thanks to Helen Mozzi for the cat-themed chemo care package, which included this fabulous pen:
(Photo of pen with a cat and pink fur)
With a pen like this, how could I not write a best-seller!
Also, for those of you who haven't seen me in my wig, here's a photo A.J. took earlier this week:
(Photo of Farrah Fawcett)
That A.J. sure is a good photographer, isn't he?
Love & hugs,
The news is good! I saw Dr. Sledge today, and he said the tumor is down to about 6 mm. That's about a 90-percent shrinkage from the original size. Woohoo! So it has continued to shrink while I'm on the Taxol. He said it could even shrink out of existence, which they call a complete response. But they will still do the surgery, since the surgeon explained that there could still be "fingers" that extended from the tumor, and they have to make sure all of the margins are clear. But it's looking more and more like it will be a lumpectomy. Let's hope! I'll still have six weeks of radiation as well. So we're looking at surgery in mid August and probably finishing radiation by the end of October.
Another good thing is that the Taxol chemo side effects are much less severe than those I had while on the Adriamycin/Cytoxan combo. Just some aches and fatigue, and only one day where I felt nauseous.
By the way, what do breast cancer treatment centers and Congress have in common? They're both filled with bad boobs! (Except for the ones I voted for, of course.)
Special thanks to Oberon for taking me to my first Taxol treatment (today was my second, and I was able to go alone); to all of my family members who participated in the Quad-Cities Race for the Cure (which was rained out, but they still got their dough); and to Helen for the Tinkerbell brownies. Below is a photo of me getting chemo and a shot of what I'll look like when I'm done. Wings!
Love & hugs,
(Photo of me getting chemo, then a photo of Tinkerbell)
Today was my last chemo treatment. YEA!!! The doctors can no longer feel any tumor mass, which is very good. However, they won't know my prognosis until they see the pathology report after my surgery. Both my oncologist and my surgeon have explained that the tumor can have fingers that reach out into the surrounding tissue. So although my response to the chemo has been great, I'm not out of the woods yet. (Perhaps while I'm there, I'll enjoy seeing some lumberjacks. ;-) )
So next up is my surgery, which is scheduled for Tues., Aug. 17. That date could change depending on what my upcoming MRI shows. I will be getting the MRI, an ultrasound and a mammogram on July 27, then meeting with the surgeon on Aug. 9. He will tell me then whether he recommends a lumpectomy or a mastectomy. However, he may not know until he gets in there just how much tissue he'll have to remove. If it is a lumpectomy, I'll have to undergo six weeks of radiation. If it's a mastectomy, I may not need the radiation. So there are a lot of things we simply won't know until after the surgery.
Question: What's the difference between a lumpectomy and a mastectomy?
Answer: One just takes a tortilla chip. The other takes the whole enchilada. (Pass the salsa, please!)
If I do end up having a mastectomy, I'll probably opt for reconstruction. I've included a photo below of what I'll look like after that. Apparently the woman in the photo no longer needs her breasts.
(Photo of Anna Nicole Smith)
Doesn't Anna look angelic here? I'm sure she'd leave her breasts under my pillow for me. The Boob Fairy!
I recently went back through all of the wonderful get-well cards I've gotten from so many of you. Thanks again! And special thanks to Jessica, who sent me the excellent Melissa Etheridge CD, The Awakening, which Etheridge produced after her own battle with breast cancer; Helen for the Tinkerbell fruit chews; and Barb for all of the custom-made earrings. If I've left anyone out, please forgive me. It's the chemo brain!
I'll leave you with some lyrics from the Etheridge CD that really touched my heart:
We do our best
We stay in step
As time goes marching by
But there's something wrong
We don't start living
Until we almost die.
I'm very optimistic I'll beat this cancer, but we all have to go someday. I don't know about you guys, but I intend to go out laughing.
Love & hugs,
Let's cut to the chase: Lumpectomy! Woo hoo!
Yes, the news is good. An ultrasound showed that the chemo shrank the tumor from 3.1 cm to about half a centimeter. An MRI showed no cancerous activity at all. So next Tuesday, Aug. 17, I'll have a lumpectomy, and they'll remove the sentinel lymph node. They will check the sentinel node during surgery to see if it has any cancer cells. If so, they'll remove more lymph nodes. The lumpectomy tissue will be sent out for a pathology report that will come 3-5 days after surgery. So I'll have to wait a few days to know whether they got "clean margins" (all of the cancer).
I will have to spend the night at St. Vincent Women's Hospital, but it's officially called a 23-hour outpatient procedure. Ah, the joys of health insurance.
Alas, I won't get the new boobs I dreamed of. I'll continue to look like the photo below. I feel your pain, Kate Hudson!
(Photo of a cutting board. A very flat cutting board.)
A few weeks after surgery, I will start six weeks of radiation therapy to "mop up" any leftover cancel cells. A.J. is already cracking jokes about my radioactive boob. If only he still used film in his camera ... I could ruin it all. ;-) BTW, A.J. is having cataract surgery this Thursday, so please keep him in your thoughts too.
Question: What's the difference between a dairy farmer and a breast surgeon?
Answer: One squeezes teats for milk, while the other cuts teats for MOO-LAH!
Thank you all for your support throughout this journey. I'm feeling much more optimistic than I was initially. I now feel like beating breast cancer is easier than getting a book published!
Love & Hugs,
Just a quick update for those of you who don't already know: My surgery went very well, even better than hoped. The sentinel lymph node had no cancer, and they didn't have to install a drain after all. So this will make my recovery easier. We'll get the pathology report on the tumor in a few days. If the margins are all clear, then it's on to radiation. If you don't hear from me, you can assume no news is good news!
Special thanks to Meredith for the candy, Kara for the flowers, the Wonches for the treats, the Mozzis for the Pig Popper and the joke book (What makes a doctor angry? Not enough patients!), and to all of you who sent your well wishes via cards, e-mail or Facebook. You're the best support team ever!
Now if you'll excuse me, I have some Drano to return. ;-)
Love & hugs,
I met with my oncologist, Dr. Sledge, yesterday, and he said I had a pathological complete response to the chemo. This means they could find no evidence of the cancer when they did surgery. This also means that my prognosis is very good: There's a 90-percent chance I'm cured. WOOHOO!
I met with my radiation oncologist, Dr. Frank Peyton, on Thursday. They did a CT scan yesterday in preparation for my radiation treatments. I'll have a "verification" appointment, and then I'll start the actual treatments, probably on Sept. 20. I'll go five times a week, Monday-Friday, for 6-1/2 weeks. I'll have a total of 33 treatments. After that, I'll be DONE! YEA!!!!!
Unfortunately, I will not glow in the dark while getting radiation. So A.J. will not be able to use me as a night light after all. (Sorry, honey.) However, I will be able to read minds. Look out!
The down side is that my boob may end up looking like the photo below. Ew.
(Photo of a dried apricot)
Thank you all for the cards, prayers and well wishes. Special thanks to Shari for the beautiful necklace and to A.J. for ... everything. I have had some rough patches lately, and that 10-percent chance of a recurrence means I'm not completely out of the woods. But I'm very optimistic, and the support I've gotten from all of you has made this journey much easier than it would have been otherwise. Let's all make the most of the time we have, however long it may be.
Love & hugs,
Since I technically don't have breast cancer any more, I may have to change the name of this network. What a nice problem to have!
I'm e-mailing you now for three reasons. First, I saw my oncologist last week, and my health is generally good. I'm still struggling a bit with chemo brain, so I'll be meeting with a specialist to discuss that. Also, a blood test found I have some kind of vitamin deficiency -- either B12 or folate -- so they're running another test to determine which, and apparently it will be an easy fix. If it's B12, you know what that means: BINGO!
Second, I don't want you to think I had a party to celebrate the end of my treatment and didn't invite you. We've just been so busy with other things that I never got around to it, and the next few months are going to be pretty packed as well. So there may still be a party eventually, but I'm not sure when. However, feel free to have a couple of drinks to celebrate on your own. ;-)
Finally, I've already registered for the Indy Race for the Cure, which will be April 16. They're asking us to ask 10 friends for $10, so if you'd like to contribute, please go to http://race.komenindy.org/site/TR?pg=personal&fr_id=1090&px=1052427
Thanks again for joining me on this journey. I hope all is well with you and yours, and remember: A day without cancer is like a day with sunshine!
Love & hugs,