Treatment is Finished!

Yesterday I had my 30th and FINAL radiation session. I am DONE with all my cancer treatment! The marathon is over and it only took 10 months to complete (ha ha). I am so, so happy.

Of course, there are still next steps. I’ve got several doctors’ appointments in the next months to check up on me. And I need to recover from the whole ordeal. I am still very fatigued, but try to nap as much as possible (hurray for the fabulous au pair who is still with us). I have a radiation burn that I need to apply cream to on a regular basis – for the next year! I should only be red for a few more weeks though, with some peeling like a sunburn. And then, once I have my energy back (at least 6 weeks says my doc), it’s back to work and life as normal-before-cancer. I can hardly remember those days but am looking forward to it too.

My hair keeps growing in the wrong color. Definitely light brown, I can no longer pretend it’s an indiscriminate color. Let’s have a moment of silence for the fallen tresses. On the plus side, my eyebrows are back and I can go out and about looking like a semi-normal person who just has really short hair. I call it the GI Jane or the Militant Lesbian hairstyle.

As I’ve said before and continue to mean it, thanks everyone for your support during this long journey. It’s good to be on the other side of this huge milestone with you. Sometime soon we’ll have a big party to celebrate.

Radiation

I’ve had 8 days of radiation already. Time is flying by. Do enquiring minds want to know what it’s like? Every week day I have an 11:48 appointment on LINAC Machine #2 at Mass General’s Radiation Oncology department. That time is falsely specific, however, as they are usually running 20-60 minutes late. One benefit is that I get to use valet parking for only $5 a day. And I am fortunate that I live so near to several excellent hospitals – when I had my first radiation prep appointment a while ago, they gave me an info packet that included a list of less expensive local hotels and charity organizations for patients who live far away and need housing. I hadn’t previously considered what it would be like looking for treatment if you lived in the boonies. I can drive to the hospital in half an hour, or take the subway which goes a few blocks from my house. So, hooray for Boston.

After I’ve been sitting around the waiting room in a hospital gown for a while, addressing Christmas cards or chatting with the lady who has the standing appointment in the time slot before me, I get called into the room by one of a team of about 5 technicians who always take care of me. It’s a bunch of women and Barry, whom I have assured my husband spends all day with half-undressed women, most of them quite old, so Colin has nothing to be jealous of. I lie on a table on my back, with my arms over my head in “surrender” position. There are special arm rests as well as a cut out area for the head and cushions at the butt and below the knees for comfort and to keep me in place. I get to wear my iPod during treatment, so I am listening to a series of lectures on Byzantine emperors that Colin found somewhere. First they spend about 5 minutes lining me up on the machine, aligning my blue tattoo dots with various beams of light. They shift me, jiggle me, and poke me until they have it just right. They also inevitably whip out their Sharpie pens and draw more blue lines and red dots on me to help direct them. The machine is about 10 feet long and 6 feet wide, floor-to-ceiling, with one or two “robot arms” that move around me. The table lifts and lowers too. I get 4 beams of radiation each day, lasting from about 5 – 30 seconds each, but it takes about 10 minutes to do all of them and I have to lie very still the whole time. Each one is a set position with the robot arms moving to different angles and the technician coming in to the room between each beam to do something that I can’t see. I feel alternately like a car on an automotive assembly line or like I’m in a giant expensive tanning bed, if you desired to tan only one breast. And it’s working: I’m turning pink in the areas they are targeting. I am supposed to apply special cream 3 times a day on my front AND back, because the beam enters from the top and goes out all the way through and out again.

After the last beam is done, someone comes into the room to tell me I can relax my arms, which is good because I am always at the point of becoming quite uncomfortable by then. Then I get dressed and get the heck out of there. Some of my days there are longer, though. Once a week I get checked by my doctor, once a week I have to stay in the machine a few minutes longer for X-rays, and once a week I get a free 20-minute chair massage from the in-house masseuse. Yes, really. I received her services in the chemo ward as well. I told ya Mass General was good.

Current side effects felt are continued fatigue, pain in feet, and my body just feels like it’s been through a lot, which is hard to describe. My irritability is getting better, likely due to happy pills and getting further and further away from chemo. My hair is about a half inch long now, dirty blonde, but Colin swears he sees red highlights when I’m standing just so under a bright light. I’m not convinced yet. Strangely, while my hair has been growing since October, my eyebrows continued to fall out through last week. The last of the old ones just disappeared, and now I just have a little bit of pale wispy growth. Eyelashes too. I am not very thrilled by this, I think I look freaky. Picture of new hair has been posted.

Sayonara Chemo!

Once again I’m overdue for a post here…

I finished my last round of chemo on October 20. I am, of course, thrilled to be done. What I’m not thrilled about it that I’m still feeling the side effects. I am still very fatigued. I have had a sore throat for 3 months straight that just now seems to be abating. I am getting hot flashes due to early (and probably temporary) menopause. My feet hurt from the neuropathy (nerve damage) there, so I hobble around when I walk. That’s also hopefully temporary. My oncologist thinks my continued irritability is hormonal, because the chemo makes the ovaries suddenly shut down, causing estrogen to plummet. She finally sent me to a psychiatrist for it who’s got me on Ambien for sleep and Celexa for mood adjustment and hot flashes. It seems to be starting to help. Other good news is that my hair is starting to grow back! I have about a quarter inch of peach fuzz, and it’s soft like a newborn baby. Too early to say what color and texture it will have, but it’s not unusual for people to have their hair return a different color or curly instead of straight. I have a lot of new-found sympathy for bald men because my head is cold most of the time, so I mostly wear hats.

I’ve had an end-of-chemo heart scan and hearing test, both of which I passed with flying colors. No more scans are planned as part of my treatment. From now on, I’ll get either a mammogram or a MRI every six months to keep an eye out for the cancer returning, and I’ll see my oncologist every three months for a checkup. As I don’t need any more IVs, my port was removed last week. That is really a milestone! No more foreign object in my body! Though it was yet another minor surgery and I’m left with yet another inch long scar and a prohibition against lifting things for a while, it feels great to have it out. When I got the port put in, Sarah needed to be carried around a lot and the original scar stretched way out. Now she’s much more mobile. Fingers crossed this scar will fare better.

Let’s see, what else… today’s drama. Two days ago I saw my PCP for an annual checkup, and because my natural immunity is decreased from chemo, she wanted me to have 2 vaccines in addition to the flu shot I already had a little while ago. One was a tetanus booster, one was a pneumonia vaccine. Yesterday I noticed that the pneumonia vaccine arm had a 2-3 inch red, sore, raised mark extending from where the shot went in, and I was even more exhausted than usual. Today it looked worse, so I went to the urgent care doctor. She thinks it’s infected and now I’m on antibiotics for 10 days. Just my luck that something that is meant to prevent me from getting sick does the opposite.

In my recent posts, I groused quite a bit about childcare problems. That’s now much better. The temporary nanny for afternoons in late October was a very nice help, allowing me to rest again (thanks Gwen, Ernie and Sarah). Then our new au pair, Tina, arrived on Halloween. She’s 19, from Germany and just wonderful, patient and creative with the kids, and she won’t stop cleaning up even after her working hours have ended. I still don’t get a complete break because some combination of kids are often in the house at the same time I am, and they seek me out even if I’m hiding in my bedroom, but overall things are greatly improved.

Currently Colin’s dad and his wife are visiting. Thanksgiving is 11/27 and I start radiation on December 1. I had been hoping I would no longer be so tired by the time that starts, since it is supposed to wear me out as well, but it seems I really won’t be over chemo at all by the time it arrives. I asked my oncologist when I was going to feel myself again with all my old energy, and she said it could take up to a year. Ugh!!!

The kids are doing well. Ethan is active in Cub Scouts, has just finished an enjoyable soccer season, and is now beginning skating lessons. Martha is 100% princess, wanting to wear pink frilly dresses at all times. She gets compliments from her preschool teacher on how smart she is. Sarah is a great talker for her age (2 yrs 3 mos), able to express anything she wishes and just a little sweetheart.

Things are Looking Up!

Here’s the best news I’ve had in a while – after seeing my depressing previous blog post, two friends in California wanted to help so they have arranged a temporary nanny for a week and a half after next week’s final chemo session. They’ve just sent me Meaghan’s bio and she looks terrific. Hurrah! I’m very excited to be able to get daytime rest again! Thanks Sarah and Gwen!

The hot air balloon trip Colin and I took last week was fantastic. The weather and foliage was absolutely beautiful. We flew at sunset, 8 people squeezed into a wicker basket with very little wiggle room. We didn’t go as high as I expected – after a brief ascent to about 500 feet, we spent most of the time about 100 feet off the ground, and brushed tree tops several times. We brought Ethan back some leaves from the top of a tree, and he was thrilled. After flying for about an hour, we landed in someone’s backyard in the suburbs, and became the hit of the neighborhood children as we packed up. A few photos are posted, as well as (due to your requests, dear readers) a close up shot of my wig, and some recent ones of the kids, thanks to my parents who were here last week.

Strangely, I am actually looking forward to Chemo #12 on Monday. Because then I will be DONE FOREVER! Yeah! Even though I’ll be feeling crappy, it will be so nice to be on the other side of this huge milestone, knowing I’ll be getting better and better – at least until radiation.

Speaking of radiation. A few days after my first visit with the radiation oncologist, I went back to the department to get set up on the machine. They tattooed 5 blue dots onto me which they will use to position me in exactly the same place each time I go, and took a CT scan which the doctor and the physics department (!) will use to calculate exactly where they want the radiation beams to go. While I was there, the doctor unexpectedly asked to see me. She told me she’d talked to my medical oncologist and surgeon, and they were all concerned about me. This is not what I want my doctor to say. She said she was considering radiating a larger part of my chest than would normally be done, due to Chucky’s original size and fast growth and not reacting fully to my early stage chemo. Basically even though they don’t think it spread because my armpit lymph node was negative early on, there is also lymph that goes up (toward the throat) that she wants to radiate, just in case. This is controversial, as it goes beyond the standard of care and increases the risk of future arm swelling and some other yucky stuff, and my other two doctors had differing opinions on if it was necessary. She just presented my case at a tumor review board in order to have lots of doctors discuss me and try to get a consensus on what my treatment plan should be, though I haven’t heard back from her yet on how it went. So let’s recap here – I had extra chemo, extra surgery, and now am looking at extra radiation. I would really much prefer going to the doctor’s office and hearing “we know just what you have, exactly how to treat it, and we’re going to take care of it completely.” I’m a little tired of being special.

Birthday

On my birthday yesterday, I received a number of messages from people wishing me well and wondering how the heck I am. I’ve been meaning post on my blog for a while now, so your messages are the motivation I need to get me to sit down and write. The short answer is that things are pretty miserable. I’ve now completed my 10th round of chemo, and continue to be extremely fatigued all the time. Other side effects that come and go are prolonged bruising and bleeding, including frequent nose bleeds; neuropathy in my feet; hair loss (I still have stubble that is falling out, and other body hair is going too); sore throat; runny nose and coughing; sensitivity in the intestinal tract; and lots and lots of irritability.

I’d like to thank my latest helpers – Sarah Brydon visited for Chemo #8 and my brother Bob Rhode visited for Chemo #10. I really appreciated having both of you here. Thanks also to my local friends for their periodic assistance, in particular to my great neighbors, Karen, Michael, Olivia, and Max for lending many hands in the evenings when Colin travels. And thanks Colin for keeping up your patience and doing so much with the kids when I need to rest.

My biggest problem right now is childcare. Many of you know that we hired an au pair, Nadja, to stay with us for a year, to help with the kids. Because an au pair works 45 hours a week, I had reduced all the kids’ daycare / preschool / after school care schedules so they would be home with her much more. What you may not know is that 3 days after she arrived, she decided she couldn’t stay with us because she couldn’t sleep in our house. It turns out she’s afraid of heights, and her bedroom was on our 3rd floor, up 2 flights of winding stairs, which gave her vertigo. She was only getting one or two hours of sleep a night. Otherwise, she was great with the kids and we liked her. She was with us Aug. 29 – Sept. 26, and has now resettled with a new host family in San Francisco and reports that she is sleeping fine now. Unfortunately the au pair agency was not as quick to find us a new au pair. They spent 3 weeks offering us other au pairs who were already in the country but wanting to leave their current host families for various reasons, but these reasons often meant the au pairs were duds – bad drivers, not engaging with the kids, can’t handle the work, etc. Finally we were offered a brand new au pair, Tina, who is still in Germany. We like her and have decided to take her, however she won’t arrive until October 31. This leaves me with 5 weeks of almost full-time childcare to do on my own (except next week, when my parents are visiting for Chemo #11), during the hardest part of my treatment. Because chemo gets worse over time, I can expect to be the most tired during the month of October. But I won’t be able to rest because I will have little Martha home every afternoon, Sarah all day twice a week, Ethan after school, swim lessons for the kids, and I’ll be running around picking up and dropping kids off at varying times. Plus the Newton Public Schools annoyingly close for the Jewish holidays and Columbus Day, meaning there are 3 school vacation days in a 3 week period, but Colin doesn’t have any of these days off. Add to all this my previously mentioned extreme irritability – I find myself getting irrationally angry at the kids and yelling at them way beyond the level of their “crime,” and I feel bad afterwards, but I can’t help it. It’s all completely horrible. If anybody still wants to come help out in any way, your assistance will be gladly accepted…

Let’s see, in other news, today I have my first visit with the Radiation Oncologist. This is the doctor who will oversee my six-week long radiation treatment, the next and final phase of treatment. Previously I had assumed that radiation would begin two weeks after my last chemo, since chemo has been happening every 2 weeks, and from this assumption I calculated that I would finish everything the week before Christmas. Well, I was wrong. Usually they wait a month between the two phases, so I’ll be in treatment straight through the holiday season (every week day except the holidays themselves) and won’t finish until some time in January.

As for how my birthday was, let me say I’ve had better. Even though I’m 37, with the cancer I’m feeling old before my time. 40 is looking closer and closer. Colin was on a business trip so I was solo with the kids in the morning, had Sarah home all day and Martha home for half the day. Ethan and Martha both made me birthday cards, which was cute. I received delivery of flowers which are brightening up my dining room (thanks to both Jess and Anne). My neighbors helped me in the evening, which was really great because at the last minute I decided to take Ethan to join the Cub Scouts and their first meeting was last night. When we got home from that, Karen had already put the girls in bed, loaded the dishwasher, and cleaned up the kids’ toys. I think that was the best part of the day! Now Colin is home so we will celebrate next week. We have planned a flight on a hot air balloon in western MA so keep your fingers crossed for a clear day and beautiful foliage.

Hair Today, Gone Tomorrow

Sorry it’s been a little while, gang. I’ve been SUPER tired! But, I’m still plugging along. Here’s all the latest.

Post-surgery chemo resumed in mid-July. It was the first round of the new drug combo, but round 5 overall. That one seemed like a breeze. Colin went to the hospital with me, and when we left, I didn’t even feel sick (yet). Our TV had broken a few days before and he was about to leave for a business trip the next day, so I insisted that I must have a TV for my lying around pleasure. We went straight to Circuit City and bought the only non-HD one they carry. Wow, TVs are fancy nowadays. While there, the nausea began to kick in (due to the sales tactics or the drugs, we’ll never know). Fortunately they had a faux living room set up that I could sit in while Colin got the TV in the car. I felt kind of crappy that night, but no other nausea for that round. Just the old, familiar fatigue that lasted a week. Plus I’ve started experiencing neuropathy, which is a tingling / numb feeling in my toes. Very annoying as it is present 24 hours a day, and is likely to last until a few months after I finish all my chemo. Thanks to the multiple friends and neighbors who helped out in shifts while Colin was away!

Chemo 6 was on July 29. Both my parents visited that week, so not only did I get great helping around the house a la mom, we also got the handyman services of my dad, who installed 3 ceiling fans, fixed a lopsided floor, and moved heavy furniture. The weekend prior to the chemo we took a day trip to Martha’s Vineyard, my first time there. It seemed only fitting, as we had 3 Marthas (me, my daughter, and my mom) all traveling together. As for chemo effects, this one was much worse. The nausea was off and on for a week, and the fatigue has not yet abated. I think it will probably be a constant effect for months as well. As I keep saying, thank God for Fidelity’s wonderful disability leave policy, as I don’t know how I could possibly work and go through this at the same time.

The big side effect has finally kicked in as well. I had been warned over and over that hair loss begins 15-17 days after starting this new chemo type. I’m an overachiever, so I made it to 18 days. I would run my fingers through my hair and get dozens of strands in my hand. It began falling out all around the house. Not in clumps, but just enough to be a real nuisance. When I found it in the kids food, I knew it was time. Two days ago, Colin set up our electric shaver in our driveway, and he and the kids took turns cutting my hair. I had a short-lived Mohawk, but am now bald! I’m not as shocked or horrified as I thought I would be. Probably because I knew it was coming for a long time. I’m actually kind of enjoying my baldness. I ordered a wig yesterday, and the wig lady said I had a nice shaped occipital. So I've got that going for me.

For all of you who read this via email, go to my blog now and check out my newly posted photos. I finally posted my short haircut (bit late now), there’s one of the Mohawk, and one bald-o. There is also a link to the You Tube video of the family shaving my head.

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.

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!