Chemo, Part 2: The Re-poisoning

When we last left our heroine, she was giddily enjoying a sunny day on her chemo vacation, happy to be feeling just fine physically as her surgery has healed nicely. Alas, she knew all too well what dark days lay just over the horizon (cue scary music) - someone was planning to poison her!!! She fled to Crane Beach in Ipswitch, she ate dinner with friends, she attended childrens' parties, she had a massage, she even rode roller coasters and water slides, but nothing could shake the looming appointment with the dreaded Chemo Nurse, who roams hospital corridors in full body protective gear, brandishing bags of Adriamycin and Cytoxin, determined to find the woman with short red hair and send these poisons into her bloodstream. WILL Martha submit to Chemo Nurse's ministrations? WILL they team up to vanquish Chucky for all eternity? HOW will Martha look as a finally bald person? Stay tuned as our story unfolds...

Do you like my entry for worst first paragraph for a novel? What are those awards called?

Anyhoo, chemo starts back up again tomorrow. Now I'm doing the regular course of breast cancer treatment, Adriamycin and Cytoxin, plus Avastin again which is one of my trial drugs. It really sucks to be feeling just fine right now, but knowing the misery that awaits me for the next six months. I just have to remember that I was able to finally feel like my old self again about a month after chemo finished the first time, and trust that I will again in the future as well.

Meanwhile, bad news #1 is that our adored live-in babysitter Rachel has gone home to Montana so we are without as much help for the summer. On the upside, we have just made arrangements for an Austrian au pair to join us in September as the school year begins. And bad news #2 is that our TV has just died, so we're scrambling to get another one by Thursday, before Colin has to go on a 2-day business trip, because TV is about all I'll have the energy for in the post-chemo days.

That's it for now. I'll post how I'm feeling after treatment within a few days.

Clean Margins

Surgical success! I heard from my surgeon, and the tissue removed in the 2nd surgery was negative for cancer, so we've achieved the clean margins we were looking for.

Next step, resume chemo, with a new drug mix: adriamycin and cytoxan (the standard breast cancer treatment) paired with Avastin (trial drug), starting July 16. The date was pushed out by 2 days because we couldn't start chemo until at least 3 weeks after surgery to allow for healing.

2nd Surgery

Second lumpectomy was completed today, and again we need to wait about a week to find out if we got clean margins this time. Keeping all my fingers and toes crossed! Using my port was once again a drama. I absolutely insisted that they use it, though the anesthesiologists suggested several times that it would be easier to just run a new IV in my arm. Yeah, for them, maybe. The nurse in the surgical unit who was supposedly experienced with ports tried to poke the needle into it about 4-5 times, but couldn't get it to work. This was with 1 other nurse and 4 anesthesiologists observing so they could learn how to do it. I don't mind the observers (all of whom had a good feel up of the port as well), because I know that's the only way they can learn, but I felt like a sideshow attraction. Eventually they called my regular nurse in the infusion unit (where I get my chemo), where they do these things all day long, and she agreed to send someone over to help. The audience reconvenend and she got the job done in one try with a lot less painful poking, to many oohs and aahs of appreciation. Hooray for oncology nurses! All my advocating for myself paid off, and hopefully for future port patients as well. The infusion nurse offered to give a port education talk at a future surgical nurses' meeting, and also said she could arrange for the surgical nurses who were interested to spend a day in infusion getting more port practice. I'm feeling good that I didn't back down and let them give me an IV this time.

Not much to report on the actual surgery as I was asleep. I assume something happened because I woke up bandaged and sore.

Assuming I get a good result from this surgery, we're now planning to resume chemo on July 14th. Any ideas for how to celebrate Bastille Day in the hospital?

Surgery: Somewhat Successful

Lumpectomy was performed June 11th by my surgical oncologist, Dr. Michelle Specht. Adding cruel insult to injury, Colin and I were required to check in at 6:00 a.m. for a 11:15 a.m. scheduled surgery. This followed a hot night in which we slept with the windows open for some breeze, and our stoopid neighbor decided to set off fireworks at 11:00 p.m. Naturally Sarah woke up and cried off and on for the next hour, requiring me to go into her room about 20 times. Plus I couldn’t eat or drink after midnight, so I arrived having a head start on being tired, hungry, and grumpy which would only worsen over the course of the morning.

The first event after check-in and changing into a hospital gown was a lengthy disagreement over whether they would use my port or place a new IV line. I insisted to the day surgery nurse that I wanted them to access my port and use that for any IVs. First she said that the anesthesiologist wouldn’t want to use the port (out of fear it would get ruined – huh?). Then after talking to a few people, she changed her story to say that since I needed to get a mammogram after having the line placed, the people in radiology told her we couldn’t use the port (which is on the upper right side chest) because it could get in the way of the machines. I gave in and let them put in an IV in my hand, but made it clear I was very unhappy about this. Since I was being a difficult patient, at least they called in an anesthesiologist to do it, and he did a beautiful job. As opposed to the other nurses who’ve tried IVs on me, he took 4 extra steps: first he warmed my had on a bag of heated saline solution, then he put the rubber tourniquet around my wrist instead of the usual arm location, he injected me with Lidocaine first (ow, but less so than otherwise), and finally choose a smaller than normal needle for the job. If they ever talk me out of my port again, I’m demanding this luxury treatment!

Next came the worst part of the day. I was sent via wheelchair (hospital rules) to radiology to have wires placed on either end of Chucky so the surgeon knows exactly where he begins and ends to aid in removing it entirely. On smaller tumors they may put one needle right in the middle of the cancer, but on my last MRI they had spotted some calcifications next to Chucky that “are probably nothing, but we’ll take them out too just to be sure.” Picture this: I am in the mammogram machine, undergoing “compression,” in other words with a squished flat left boob and no way to escape, and then they start poking more needles into me! The doc put in some Lidocaine, followed by a needle with a wire inside it. But the wire part hurt so much I began to cry so she gave me more Lidocaine. Now, why wouldn’t she just give me a crapload (this is a technical term meaning “lots”) of Lidocaine in the first place, just in case? So then I was miserable and scared and in pain, but wanted to get it all over with so we continued. She poked the two needles in – way way in – and then went and took a picture to see where they were inside my breast. Then she came back to me, jiggled the wires around a little bit, and took a picture again. Repeat about 6 times until she had them exactly where they were supposed to be. After about 20 minutes in the machine I was finally released. At the end of all this, I asked the nurse who was still in the room why my port couldn’t be used for my IV, since that part of my body was really not near the mammogram machine after all. She said, “oh, it would be fine to use your port, we have people come down here with them accessed all the time. Who told you it couldn’t be used?” This injustice set me off again so I was wheeled out to a waiting Colin all weepy and undoubtedly scared everyone in the waiting room.

Back upstairs to day surgery, where we had to let the wires sit for 2 hours before we could do the surgery, I’m not exactly sure why (maybe it’s like Jello). I read my Janet Evanovich novel which nicely fit the escapism bill. Dr. Specht came to talk to me about the surgery and warned me that there was about a 20% chance with this procedure that we wouldn’t achieve clean margins, which means that when the tissue is looked at under the microscope afterwards, they find that the tumor reaches the edge of the tissue, which means some of it could still be left in the body and they have to try again. Finally another anesthesiologist arrived to ask me what kind of sedation I wanted for the surgery – something that would let me be awake and talking while it was going on, or something that would knock me out entirely. He didn’t even get the question out of his mouth before I said “I don’t want to know or feel a thing!” Really, who would? Especially after the horrors with the wires. I was wheeled into the OR, given a mask, and woke up about 2 hours later, groggy with a chunk of missing breast.

Colin took me home and I napped the rest of the afternoon. He stayed home with me for 2 more days, and though I was sore, I wore a sports bra 24-7 and took lots of painkillers so I was capable of getting around and we even went to movies during the day, a rare treat (“Zohan” – good, “The Happening” – didn’t). When the weekend rolled around each kid managed to bump me on the surgery breast at least once, which was mighty painful.

RESULTS
Now, just as I’ve been on the mend, Dr. Specht called this evening. The pathology results are back on the tissue they removed from my body. The good news – there was dead cancer in there, showing that the chemo was working. The less good news – there were also live cancer cells, which we’d prefer not to see. Also the tumor was 4 cm across, larger than the 2.5 cm we thought it had shrunk to. The rotten news – while there were clean margins on almost the whole thing, there was one little spot of dirty margin. Therefore I am going back to the hospital next Tuesday to do this all over again. At least we get to skip the wire thing next time.

Prepping for Surgery

My surgery date is fast approaching - I report for duty at 6 a.m. on Wednesday, June 11th. Colin is taking 3 days off work to be there for the surgery and recovery time. I'll only be under the knife for about 45 minutes, but I'll be at the hospital for 6-8 hours. I don't know what I'll be doing for all that time, but will let you know afterwards! A few days ago I met with Dr. Ryan, my oncologist, for a final exam to give me the green light for surgery. She reviewed the results of a bunch of recent tests (MRI, EKG, mammogram, blood work, radioactive heart scan - alas no superhero powers arose) and said they all looked fine, no problems. Good to know my heart at least is working right! She also warned me that the surgery to remove the lump can be tricky because the tumor is not a solid ball, but kind of a blobby shape. She said there's maybe a 50-50 chance that the first surgery might not remove the whole thing. The way they know if we got it all is that after the surgery, the tissue is sent to pathology, and they check if it has "clean margins." Think of an egg - the tumor is the yolk, and the white is the margin of healthy tissue. They want a 2 mm margin of healthy tissue all around the tumor. So they have to test all the edges as much as they can by taking slices and looking at them under the microscope. If there is any area where the tumor touches the edge of what was removed, this means that there could still be some cancerous cells left inside me, which is bad. So that would require a 2nd lumpectomy. And if they still don't get it all by then, it may still warrant a mastectomy. It will take 7-10 days to get the pathology results after the surgery before we know if we have the clean margins we need. Oh, and we can't start scheduling any of the next rounds of chemo until we have the pathology results to know if the surgery was successful.

Dr. Ryan also reiterated that they'll need to take more tissue than I might expect, and I should expect to be permanently lopsided once everything heals. Cheerful lady! But I understand she wants to give me all the worst case scenario stuff up front so I'm not disappointed. I'm actually happy to be at the surgery phase of my treatment because it seems like a little vacation from chemo. Sure, I'll be in pain for a while, but at least I'll be kind of a normal person for a few weeks. And I should be feeling better just as Ethan finishes kindergarten and has a week of no school before day camp starts. Together with Rachel, our babysitter, I'm planning some fun outings with him.

Speaking of camp, I'm gearing up to go myself this weekend. Officially the program is called "Knowledge Strength & Grace: Living Through Breast Cancer 2008 retreat" but I just call it Cancer Camp. I'll spend 2 nights at a YMCA camp in New Hampshire doing traditional camp stuff (beach, canoeing, sleeping in cabins) plus they have lectures on cancer topics, yoga, nutrition workshops, breakout group discussions, etc. And it's all completely free as they have a bunch of sponsors - well, the price is having a life-threatening illness, I guess. I'm very excited! I get back the day before the surgery, so the timing is absolutely perfect as I should be feeling fine while I'm there. Tonight Colin and I are going to a Red Sox game, and my college friend Kathleen is visiting this weekend, and I'm still not bald, so all in all things are great just now. Ciao!

Surgery plan

Hello dear readers. I’m still around, just SO TIRED and not finding a lot of energy to write posts. Chemo is definitely getting harder each time. The 3rd session, I was expecting to be feeling “normal” by week 3 after treatment (which was last week) but found I still needed naps most days. Friday May 16 I had lunch with some friends from work and stopped by Fidelity’s offices to say hi to people. I felt fine while I was there, and it was great to see my colleagues, but when I got home again after 7 hours out of the house, I was exhausted and collapsed in bed. This week I had my 4th round of chemo, and not only am I fatigued and crabby, I’m also feeling more nausea than I have previously. Haven’t thrown up yet – some kind of weird honor I’m holding myself to – but feeling closer to it than ever before. Thank goodness for anti-nausea drugs and my latest sainted visitor, Larissa, who’s doing a marvelous job encouraging me to drink more water and helping with the kids. By now the kids are pretty used to a stream of visitors arriving and immediately offering to read to them, play legos, do puzzles, etc. so at least they’re quickly warming to each new person. When we had our first visitor, Andrea, it took 3 days until Martha would even talk to her. Thanks to her pioneering, however, the stranger anxiety has been worn right down! And for all of you who are still wondering how you can help, too, if you’re local you can invite a tyke or two out for a playdate, and if you’re not, come be a visitor during one of the future 8 chemos, between July – October! Now some of you might be saying, “I told you I’ll come visit, but when?” The next rounds of chemo won’t be scheduled until my surgery is successfully completed. I *will* let you know when I know more.

As for surgery. I finally met with my surgeon again last week. We discussed the pro’s and con’s of lumpectomy (tumor only) vs. mastectomy, and decided on lumpectomy. Since the tumor has been shrinking it is of a size that can be removed without taking too much additional tissue. I didn’t want to have major surgery if I didn’t have to. And studies show that doing the lumpectomy, combined with 6 weeks of radiation after chemo ends, is equally effective as mastectomy at reducing the chance of future recurrence. So, fingers crossed! I did have a bit of bad news along with this appt – the doctor sent me for a mammogram and ultrasound so we could have updated images before surgery. Up until now the doctor has been measuring tumor shrinkage by hand, and this was the first more scientific measure of the tumor size. The ultrasound showed the tumor to be 2.5 x 1.5 cm, as opposed to 4 x 3 cm before chemo. A very respectable reduction in size, and the doc is very happy with the progress, but not the 1 cm size that was estimated at my previous appointment. Also the tumor is less dense than it was originally, and there is some healthy tissue growing amongst chunks of tumor. Another good sign. I’ll be very glad when this sucker is out of my body. Surgery is now scheduled for June 11, with a bunch of pre-op tests and appointments coming up.

I still have my hair, but just cut it again. My old hairstyle was getting out of shape – not only am I not bald but my hair is growing! – and I was tired of it hanging in my face, so a few days ago I got a SHORT haircut. I’ll try to post some pictures soon. I’ve been told repeatedly by several docs and nurses that even though I’ve dodged a bullet on Cisplatin in terms of keeping my hair, when I switch drugs to the post-op chemo, I will go bald for sure. So I got it cut to a style that matches the wig I’ve picked out, to help the kids and me adjust to what I’ll look like come July anyway. Frankly, I don’t like the new hairstyle but too late now! Maybe I’ll start wearing hats and scarves early. The other day a friend sent me a lovely scarf (thanks Rachel!) and I had wrapped it around my head to try it on just as Ethan came home from school. He asked, “are you bald now Mommy?” and seemed kind of excited about it. We have set the expectation with the kids for so many months now that they’ll be shocked when it finally happens!

Bye Bye Chucky...

Getting back on my feet now from a week of naps, and another exhausting rainy weekend being jumped on by a toddler.

In last Monday's exam before chemo treatment #3, Chucky was estimated to be 1 cm in size - another dramatic reduction! That's pea-sized, people! At this rate the surgeon will only have some microscopic cells to go fish for - and yes, I'm still waiting for it to be scheduled.

p.s. I want to give a shout-out to my new visitors from HBS Section C, hi guys! A special thanks to Grace for driving up this weekend from NYC and enthusiastically taking the lead role in my budding reality TV show (without the cameras - yet), "mom-of-3-for-a-day." Hope you get a nap too, Grace!

Time for an Update

Been a while since I’ve managed a post as I’m already sick of having cancer and thinking about it all the time! However there is news to share so here’s all the latest.

First good news: the results of my genetic test for the breast cancer BRCA-1 and BRCA-2 genes came back negative. This means I do not have a genetic predisposition for breast cancer (just bad luck, apparently) and reduces the chance of recurrence of my cancer in the future. It also means there is no reason that any of my female relatives need to be tested for it, at least not on my account. It’s a huge relief that I don’t have to worry about my two daughters having a higher chance of getting this in the future.

This test was the last piece of input needed to make the surgical decision. As I understand it, lumpectomy plus 6 weeks of radiation is equally effective as mastectomy in reducing the chance of future recurrence. And just removing the lump, now tiny, will be much much easier for me to recover from. Hooray! (Haven’t discussed it with my doctor yet so nothing’s final.)

Second good news: my port has settled in a bit and is no longer causing me pain in the neck and arm. I can still feel it when I think of it, and it’s tender to the touch – Sarah managed to whack it today which made me wince – but it doesn’t hurt if it’s just sitting there. It was successfully used to draw blood for the mandatory week-after-chemo sample, though I did go a bit faint at the time and wondered if getting a needle poke in the arm wasn’t a bit better than all the creams and needles and tubing and blood thinner and saline flushing required to get blood thru the port. Nonetheless I’m sticking with it, and it’s definitely better than an IV for the chemo infusion.

Third good news: I still have my hair, defying all early predictions that I’d be going bald within 2-3 weeks of starting chemo. Every day longer I keep my own hair is a good day!

Other goings on: I’ve managed to make one yoga class so far, less than I originally anticipated when I went on my leave of absence from work. I’m either tired, or have conflicting plans, or just don’t feel like exercising though I know I really should. I don’t know how anyone works a job while doing chemo, because I’m completely wiped out. It’s only the 3rd week after chemo that I really feel myself again, but I still don’t have energy to go to an office or solve the world’s ills. I’m mostly puttering around the house, catching up on my naps, TV, and your movie suggestions thanks to Netflix. Running errands like grocery shopping, going to the pharmacy, or taking kids to the doctor. Picking up Ethan from school and trying to make sure dinner happens for the family. Basically taking on the role of homemaker, and I’m amazed that I still don’t have enough hours in the day to get done all that I want to get done. Everything takes longer when I’m low energy.

I’ve also tried my first support group, run by the Wellness Community. That’s a national non-profit that runs a whole bunch of cancer programs free of charge. I’ve been looking for a support group with young parents like me but haven’t found one yet. The Wellness Community’s philosophy is that all support groups should be mixed, so the session I went to had a 70-something guy with stage 4 lung cancer and 6 months to live, and a grandmother with her 2nd bout of breast cancer which had spread to her lungs. My first reaction was that I couldn’t relate to these people whose issues are totally different from my own, but they were very nice and surprisingly cheerful and since they’d been down the cancer road a lot longer than me, had some good advice to pass on. So I’ll give it a few more tries and see if they keep growing on me.

People keep asking me how the kids are doing with all this. Ethan, at 5.5, is pretty aware. He likes me to read him the kids’ books on cancer, and seems to understand them well. He knows that I get chemotherapy, and when I tell him I’m too tired to do things, he’s good about leaving me alone for a bit. Martha, at 3, can answer the question “What disease does mommy have?” with “Cancer.” But she doesn’t really understand. Initially she asked me every few days if I was feeling better, probably assuming it was like a cold. Now I think she’s pretty much forgotten about it. Sarah, at 20 months, is of course clueless. All seem to be regressing lately. Ethan has been quicker to cry or break down when upset; Martha’s potty training has gone backwards; and Sarah is extremely clingy to me. Everyone wants mommy all the time, preferably exclusive of the other kids, but there’s less of me to go around as I’m either tired or don’t have the patience for their whining and neediness. So it’s hard on all of us. Colin steps up and takes the kids off my hands as much as he can, and then he’s exhausted too. I just keep thinking that a year from now the kids will all be a year older and that much easier, and I’ll be done with this treatment and growing back my fuzzy head again (I still anticipate going bald eventually). Please let the time fly…

Tomorrow is chemo #3. My longtime friend Jessica is here to visit now and doing an excellent job entertaining the kids with walks, books, swimming, and the Children’s Museum.

Chemo #2 – Chucky is Shrinking!

A few days after my 2nd infusion, I am as expected tired, nauseous, low energy, and in a bit of a drug fog (did I mention that Cisplatin is supposed to be about the worst of the chemo treatments?), so this won’t be a long post. I have great news to share – Chucky (the tumor, for my newer audience) has shrunk after my first treatment. Hooray! Using the unscientific measuring method of the doctor’s hands, the pre-treatment estimate was that Chucky was 3 x 4 cm. On Monday, she estimated it at 1.7 x 3 cm, a dramatic reduction in volume. This makes all the hassle and suffering worth while.

My new port worked great functionally, it was all numbed up thanks to the cream I applied before I left the house, so all I felt was a tiny pinch when it was accessed. It was quite comfortable and easy to use, actually. The downside to the port is that since it was placed, it has been bothering my neck, as its catheter goes from my chest, over the collar bone, and back into the heart. Right where it is located on the collar bone, it was getting tugged painfully every time I turn my neck, which is a lot. (Hello, ever try backing the car up or changing lanes with only a slight head gesture?) I’ve also had some unexplained tingling in my right arm. Last week I went in to have the port X-rayed again to see if there was any problem with it, but was told it was fine and my choices were to live with it or have it put in again, which would delay my chemo schedule. I opted for seeing if it would get better on its own, which it has somewhat, but I can still feel it all the time, just not as painful as before. I’m still hoping for gradual improvements.

A bit more good news, my hair hasn’t fallen out yet so this past weekend when I went out to the one fancy event of the year with Colin (fundraiser for our elementary school), I didn’t have to go in a wig. So except for not feeling well, things are going okay!

p.s. Thanks to everyone who’s been helping with meals, it’s been very nice.

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.