The Bionic Woman

Port is successfully implanted in my chest, hooray! Now I feel like the bionic woman. Perhaps I should get a few more wigs and start fighting crime in superhero disguises with my new powers. Or maybe I’d make a better arch-villianess, Chemo Woman, with toxic chemicals running through my veins and breasts that can kill! (At least one, anyway.) DC Comics, if you’re out there, my ideas are available for sale…

Naturally the port procedure was accompanied by some amount of drama. The night before I started getting a stomach ache about 9 p.m. It got progressively worse and didn’t seem to be fixed by eating, Pepto-Bismol, Tylenol, or my anti-anxiety sleepy drug. So after being woken several times by my stomach during the night, I called my doctor at 3 a.m. to see if she had any suggestions or if it was chemo-related. She didn’t think so as I was 10 days after chemo by this point, and told me if it kept hurting I should go to the ER. One of the things that really worried me was that it would be some kind of problem that would prevent me from having the port put in. When I woke up again at 6 a.m. and it still hurt, 9 hours straight, I decided it was time for the ER. Colin took me to Newton-Wellesley hospital where they poked me and asked me if it hurt, took some blood, did an ultrasound, and ultimately diagnosed me with… a stomach ache. I suspect it was caused by stress. Meanwhile it went away while I was there so I felt pretty stupid. But I was glad to have a clean bill of health from them to get my port, so it was back home for a quick shower then straight to MGH. Can’t get enough of those hospitals!

One of my big worries was that in order to get the port, I had to have another IV placed first. Since I’m now gun shy about IVs, I warned the nurse that I had a bad experience last time. “No problem,” she says breezily, clearly assuming that all other nurses are incompetent morons and she alone is able to place an IV effortlessly. She jabs my hand even though I’d showed her my one good vein in my arm. And she nicked the vein so had to take the IV out again. WTF! Then she says “I guess I should have listened to you about the good vein.” Well duh! 2nd time was successful and they immediately gave me painkillers and sedatives so I have little to report after that. I went home and slept straight from 5:30 p.m. - 4:30 a.m. I now have some big bandages on my chest and somewhat limited range of motion in my neck and right arm. Should be good within a few days.

Other goings on…
I am starting to shop around for breast cancer support groups and a good, gentle yoga class. I’ve been amazed at the resources available at Mass General. They’ve got a sizable cancer resource center that runs all kinds of educational, support, and exercise programs – yoga and qigong – all free. I’ve taken a class on managing stress and another on understanding blood counts, and a class sponsored by the American Cancer Society called Look Good, Feel Better which basically taught us how to wear head wraps and put on make up and sent me home with a goodie bag full of free makeup. During my treatment I can get free chair massages (yes please) and acupuncture (no thanks). In the infusion center, there are TVs and DVD players at each chair with a library of DVDs to choose from. There’s also a beautiful healing garden with great views of the city. It’s a very nice place to be, given the situation. But I also don’t want to spend my whole life down there so am looking into Newton-based support groups and some of the local yoga parlors. I want to find a support group of people just like me – optimistic young moms who aren’t going to let this diagnosis get them down – and have been told to keep looking around until I find one that I like.

Haircut with a side of emotional distress

It’s been an exhausting week. I now know it takes an entire week to recover from Cisplatin, the first chemo drug, as I am just today feeling normal again, albeit still a little tired. And since I’m told chemo has a cumulative effect which can get worse over time, it’s a good thing the treatments are currently 3 weeks apart. All last week I was basically very tired, and somewhat queasy, though the nausea medicines worked fairly well on that end. I don’t even know what I did on Tuesday and Wednesday, life was just a blur of naps, pills, saltwater & baking soda mouth rinsing (yuck, by the way), and mom occasionally bringing me jello. I do know I was an emotional wreck and feel bad about being so crabby with my family. The weather was cold and rainy which certainly didn’t help matters.

I blame part of the emotional exhaustion on the anxiety of sitting around waiting for my hair to fall out. I’ll admit that my hair is my primary vanity item, and it really sucks to think I’ll be bald soon. Most likely it will start coming out 2-3 weeks after the first chemo, so 1-2 weeks from now. In order to retain some kind of control, on Friday morning I got a transition haircut. Mom, Ethan, and I went to a salon to have my ponytail cut off. I only had 9 inches, one inch too short for Locks of Love, but fortunately the stylist told me about Pantene.com which accepts 8 inch ponytails so I can still donate it in order for sick kids to get wigs. My new haircut is a bob, short in back and almost chin length in front, cute enough while it lasts. I’m now adjusting to the back of my neck being cold all the time. Mom took pictures which I’ll post shortly. Little Martha keeps asking me why my hair is short, but Ethan gets the concept. We’ve been reading some kids books on cancer to help explain.

On Saturday, Colin and I went to see a wig specialist to order my “scalp prosthesis,” as it’s called in order to make insurance pay for it. Matching the color is the hardest part, and of course nothing was exactly perfect, but we found something that we think will be close. The style is basically short around the back and a bit longer on top, with bangs, since I want to be adjusted to short hair for when it grows back. My main problem with the style is precisely that – it looks like hair that’s styled. In reality, I’m not a person who would spend a long time blow drying and froufing my hair, so anything that looks like that’s been done just screams “fake” to me.

On the weekend Colin set up the trampoline that our neighbor handed down to us, so he and the kids had a great time bouncing all over the place and not breaking their necks yet. We had a nice Easter with egg hunt, sugar high, and lovely roast cooked by mom. She left yesterday evening so I am now on my own during the day, but don’t worry, I’m doing okay right now. Next visitor / nursemaid arrives Friday, from Australia, to stay for 3 weeks, just in time to take care of me after the port procedure.

The Human Pincushion

First chemo is behind me, only 11 more to go! It did not begin well, however. They tried FIVE TIMES to get an IV line in before it worked. My veins just kept closing up. Now I’m bruised all over my arms and hands. My nurse said I was the worst case she’d seen in a long time, a dubious honor. And didn’t I just write about how much I hate needles? My crying in pain did earn me an upgrade to a private room, lest I further disturb the other patients. Just as well, the St. Patrick’s Day themed segments on the morning show being played on high volume by my neighbor were really starting to grate on me. Oh, and the difficulty in placing the IV meant that we didn’t even start my meds until 1:00, when I was expecting to start at 10:30 and be home mid afternoon. I was also surprised to learn that in addition to the 2.5 hours of drugs, I also would have 4 hours of IV saline to water it all down and get my kidneys pumping. So by the time mom drove me home, the kids were already in bed.

The remedy to the IV situation is of course another medical procedure involving needles. Now I'm going to get a port put in some time next week. This device, about the size of a quarter and ½ inch thick, will be surgically inserted under my skin in the chest and connected into the vena cava (big old vein). Subsequently they can use it for all blood draws and to administer IV drugs without having to hunt for a vein. Plus I'll get a numbing cream to rub on it beforehand so I don’t feel the needle sticks. It will stay in for the rest of the year, until I’m done with all my treatments. Yippee!

Today I’m feeling not great, not terrible. I’ve taken lots of anti-nausea drugs, which seem to have halted my queasy stomach, and am primarily sleepy and low energy. I’ve been able to eat and keep drinking water. Mom’s about to drag me out for a walk since it’s a nice day out which I admit sounds like a good idea that I probably wouldn’t do if I were home alone.

Twas the Night Before Chemo…

…And I’m terrified! Feeling very tired and very much dreading that IV injection tomorrow. Partly because I only have one good vein, and still have bruises from needle sticks in 3 veins from Thursday’s heart scan. I really, really hate needles. Luckily it was a busy weekend so kept my mind off the chemo most of the time. I took some “before” photos while I still have my hair, as I’m planning to cut it short very soon, retaining as much as possible for Locks for Love, and then will do a Britney and shave it when it starts falling out. We went to a birthday party with all the kids, library, science museum, and picked up my mom from the airport. She began helping out the minute she walked in the door. Fabulous! I’m so happy she’s here and will be with me at the hospital tomorrow. Meanwhile I’m prepping for the chemo drugs by drinking loads of water to benefit my kidneys, and doing saltwater rinses to prevent mouth sores. Colin helped me prep too – although he doesn’t believe in the airy-fairy alternative medicines he thought we should give crystal healing a try and surprised me with a pair of diamond earrings on my pillow when I woke up. What a great husband.

What you can do to help

Of course you don’t need to do anything at all to help me. But as this is the most frequently asked question, and I am now about to begin treatment, here are some suggestions. Many thanks to those who have already helped during my “mentally impaired” part of this disease!

The two biggest categories that people can help with are food and kids.

“Food” primarily means providing dinner for my family so I don’t have to worry about that. My family includes 3 adults and 3 kids: Ethan, age 5.5; Martha, 3, and Sarah, 1.5. We have no allergies and like just about anything; “kid food” is not specifically required. You can cook for us if you’re local, or order take-out or arrange for pre-made meals that I just have to pop in the oven from the freezer. I’ll post a few nearby take-out options on the links section shortly.

We live near Newton Centre, MA. Email chayward@gmail.com for our address.

“Kids” primarily means babysitting or playdates for Ethan and/or Martha. My kids are all in full time daycare and after-school care during the week, so the need to entertain them and let Colin and I rest is greatest on the weekend.

I will also appreciate company to act as amateur nurses when I’m expected to feel sick. Many relatives and friends have already volunteered to visit and I’m working on coordinating those.

As this whole treatment is a marathon, not a sprint (i.e., it takes a long time, and as it goes on you only feel worse), I ask that you consider spacing out your help over time. If 10 people decide to surprise me with a hot dinner at my door on the night of the first chemo or surgery, while that is very kind it’s also not the most helpful!

To help coordinate the helpers, I’ve set up a Google Calendar on which you can view what kind of help is already planned. We’ll update it with meals offered, playdates, visits, etc. To access the calendar, go to the bottom of the right hand column of this blog. Click on the “Google Calendar” plus sign on the bottom right corner of that box to be taken to a separate Google page with the calendar. Then email me (mhayward@rcn.com) or Colin (chayward@gmail.com) with what you’d like to help with and when, and we can answer any questions. If the calendar isn't working for you, feel free to just email or talk to us directly as well.

Other ideas are good luck / encouraging cards, emails, rides to treatments, fun head coverings, trashy celebrity magazines, iTunes gift cards (to buy The Office as my colleagues got me a video iPod for treatments), or any other kind gesture… and don’t forget to pray for me, cross your fingers, not step on the cracks on the sidewalk, send warm fuzzy vibes, or whatever else you believe will make Chucky go away! Also keep in mind that this is a very difficult time for the rest of the family as well; they will appreciate any extra TLC too.

p.s. If you haven't yet, post on my “Neflix Queue” comments section from February!

Treatment Summary

As it’s hard to keep straight all the pieces of information on my treatment, especially as it’s changed several times, here is everything that’s planned, with some FAQs answered.

1. PRE-OPERATIVE PHASE: March – May
Investigational drugs that the clinical trial is studying are Cisplatin (brand name) / Cisplatinum (generic name), an established chemo drug already in use for lung, bladder, and other cancers and Avastin (brand name) / Bevacizumab (generic name), a protein.

I will receive the combination of Cisplatin and Avastin four times, with each treatment 3 weeks apart, for a total of 3 months treatment.

To quote the research study consent form:
“Cisplatin is a chemotherapy drug given by vein. It is used to destroy cancer cells in many types of cancers, and has been shown to be effective and have manageable side effects. In previous laboratory research, Cisplatin has shown good activity against certain breast tumor cells, particularly cells that are negative for ER, PR, and HER-2 [Chucky is triple negative]. It is not approved for breast cancer, so its use is investigational in this research study.

“Bevacizumab is an antibody, which is a protein that attacks a foreign substance in the body. Bevacizumab works differently from the way other chemotherapy drugs work. Usually chemotherapy drugs attack both cancer and normal cells and tissues in the body. Bevacizumab slows or stops cell growth in cancerous tumors by decreasing the blood supply to the tumors. It does this by binding to a substance found on cancer cells called VEFG (Vascular Endothelial Growth Factor). VEGF plays a key role in the growth of new blood vessels. VEGF is produced in excess by most solid cancerous tumor cells, including certain kinds of breast cancer cells. Bevacizumab is approved by the FDA for the treatment of colorectal cancer. It is not approved for the treatment of breast cancer.”

A FAQ: there are no placebos for my trial, we all get the good drug cocktail. The "control" is actually the rest of the world of breast cancer patients receiving the established treatment protocol.

2. SURGICAL PHASE: June

At least 3 weeks after the last dose of Cisplatin, I will have surgery to remove Chucky. This could be a lumpectomy or a mastectomy; we will decide after receiving the results of the genetic testing (mid-April). Even if the tumor shrinks to nothing from the chemo, it is still necessary to have surgery to get any cells that may have been left behind.

3. POST-OPERATIVE PHASE: July – October

At least 3 weeks after the surgery, I will receive the standard protocol chemo for breast cancer, plus bevacizumab (Avastin). This will be given every other week for 8 cycles, totaling 4 months.

For the first 4 cycles the drugs are: Doxorubicin (brand name Adriamycin) and cyclophosphamide (Cytoxan) plus bevacizumab. The second 4 cycles will be either bevacizumab alone, or bevacizumab plus paclitaxel (Taxol), to be determined by the doctor later.

4. RADIATION PHASE (only if lumpectomy is the surgery): November – December

Six weeks of daily radiation therapy will be required at the end of all the chemo if I received a lumpectomy.

That’s it! Anyone want to trade places?

My surgeon is Dr. Michelle Specht, my medical oncologist is Dr. Paula Ryan, both at Mass General.

Lymph nodes clean! No more biopsies!

Great news! My sentinal node biopsy is benign. This means the cancer has not spread to the lymph nodes! So no need to poke around and remove more nodes during the future surgery, and this limits my stage to 2 only. Also the radiologists have decided it's unnecessary to do any more biopsies of Sons of Chucky found in the first MRI. They believe that of my original 4 suspicious masses, they all look sufficiently similar to each other, so the benign result of the first two is good enough for all of them. Just as well because I was beginning to look like a piece of swiss cheese. I can count bruises from 3 different procedures currently healing.

To summarize, this means that of the battery of tests we've done to look for cancer elsewhere in the body, ALL have come back negative. So now we know we're only dealing with Chucky, and we're about to give him the one-two punch from my super chemo starting next week. Yee ha!

Lots of news, mostly good; 3rd and final treatment plan

Good news - results from the CT and bone scans showed NO signs of cancer spread! Still possible it’s out there as there are more tests outstanding, but this is of course a very encouraging development. I had a sentinel node biopsy of a lymph node today (more on that below) and might still need biopsies of the last 2 Sons of Chucky found in my original MRI, but maybe not. Additional radiologists have been reviewing my MRI films today so I should know about the final recommendation in a day or two.

It’s been a whirlwind of doctor visits all week and the pace will continue next week. However my life will reduce in stress slightly as my last day at work will be Friday March 7th. Subsequently I will be out on disability leave, and I’m not sure exactly when I’ll return. I found it was impossible to be functional mentally at work at the level that my projects and wonderful colleagues deserve when all I could focus on was my diagnosis and the endless tests, procedures, etc. It’s been such an emotional roller coaster, feeling sad, worried, resigned to my fate, determined to kick Chucky's ass, overwhelmed, sad again. I need to allow myself to concentrate solely on healing, and when I have some extra strength, be there for the kids. Luckily Fidelity has a fantastic disability leave policy, so I will be paid most of my salary while I am out. I could not be more grateful to them for treating me so well.

This week began with a visit to a new surgeon, at Mass General, for a second opinion. She was highly recommended by a friend, and is part of a breast cancer specialty group there. She did concur with the plan to do chemo first, but went a step further. She recommended me for a clinical trial they are conducting, which is specific to my type of cancer. The fact that I’m negative for this cancer to react to all 3 hormones is called “triple negative” and occurs in 10-15% of breast cancer. It tends to be more aggressive, which I’ve heard from many sources now. Researchers feel the triple negative breast cancer has similar characteristics to other types of cancer (lung, others) when looked at under the microscope, and hypothesize that it will therefore react well when treated with the chemo drugs that are usually used to treat those other cancers. In stage 1 of the trial, of the 26 women who were given the drug Cisplatin before any other treatments (before surgery or other chemo), the tumor disappeared in 14 of them and shrank in all the rest. Now they are at stage 2 of the trial, in which Cisplatin will be paired with another drug, Avastin, to see if that makes it even better. Neither of the drugs are new, as they’re already in use for other purposes. The surgeon introduced me to the medical oncologist who is actually leading the study, who was rather excited (in a reserved, doctor-y way) to meet me. Enrollment for this study has been open for a year and a half, their goal is 40 patients, and I’ll be #29. I imagine she did a little jig when she was back in her office out of sight. I felt sad about leaving behind my first oncologist, as participating in the study requires treatment at Mass General, but I spoke to her about it that evening and she enthusiastically endorsed the clinical trial plan. She said she would have recommended it herself if she’d been aware of it. She knew about the first round results and has a very high opinion of Cisplatin for my situation. This encouragement made the decision much easier for me. Doing the study does not mean I’ll be taking a risk by not doing the normal treatment. In fact, I will be getting the standard protocol chemo, surgery, AND this bonus round of chemo. That’s right, I’ve gone from dreading chemo to voluntarily signing up for an additional few months of it. Crazy? Yes, but I feel I should do everything I possibly can now to minimize the chances of future recurrence, as I fully intend to live at least 50 years more, and I don’t want to have to go through all this ever again. We’ll throw the book at it, to quote another friend. So it looks like I’ll be spending a good chunk of 2008 bald.

Signing up for the trial has led to a bunch more tests to do, including a brain MRI, heart function tests, another biopsy of Chucky so they have lots of fodder for their microscopes, and hearing test. These will all be next week. Then I’ll start the first round of the trial chemo on March 17th and expect to feel bad for a whole week afterwards. Fortunately my mother will be visiting that week to take care of me.

Today was a sentinel node biopsy, which in the very first treatment plan would have been done as part of the lumpectomy. This is where they inject a radioactive tracer into the breast, see which lymph node it goes to first, and then remove that one to see if the cancer has spread there. The result won’t change the chemo plan, but could change what happens in surgery later, to see if they need to scoop out more lymph nodes or not. Since my other biopsies so far have been done with local anesthesia and while fully awake, I was expecting that again. I was quite surprised when I arrived at the hospital and learned I would have general anesthesia. When I was wheeled into the operating room and told to scoot myself from the wheeled bed to the stationary one, I mentioned to the nurses that on “ER” (the TV show) the staff always carries the patient from one bed to another. They laughed and suggested that I could go to a real ER for that treatment. I shut up, scooted, and breathed deeply into the mask. It was quick, only about 45 minutes to do the surgery, and now I have a sore armpit. We need a week to get those results.

That’s about it, will keep going as more tests happen.

P.S. A lot of people who know a little bit about cancer treatment (far too many of you are in this camp, I’m sad to say) have asked me which chemo drugs I’ll get later. I will look up all the names and share them in a future post with a detailed treatment plan.