August 30, 2011

Active August

So, in case it's not obvious from my lack of posts, it has been a busy month! Since the last chemo treatment, I've participated in my sister-in-law Paula's wedding, the Avon Walk for Breast Cancer, numerous playgroups, a bridal shower, a birthday party, my Finnish course placement test, a friend's wedding, the girls' first week of daycare and Paula's wedding reception, among other things. All of this was on top of being at home on my own with both girls for most of the month and having a cold during the last week. So it's no wonder I had little time or energy left for blog posts. :)

Here are some photo highlights and a few more details from a few of the events:

Elisa and I waiting for Paula and Topi's wedding ceremony to start.

Leila giving some encouragement to Topi (a.k.a. the groom) before the ceremony.

One of the most personally gratifying events of the month was the Avon Walk for Breast Cancer. I organized a team on behalf of the American Womens' Club, and we had about 22 people. Although I've participated in many charity walks before, none of them have been for a cause that affected me directly. So it was extra special to be walking with so many of my friends and acquaintances in honor of my own fight. I was also walking on behalf of two other friends who were diagnosed with breast cancer in January. So it was an emotional day for me.

Adding to the general excitement of the day, I got a couple of great surprises. First, my dear friend, Elizabeth, who moved to Stockholm a year ago, came to Helsinki with her family for the weekend and joined us for the walk. I had no idea she was coming, although most of my other friends were in on the plan. So, when she turned up next to me as our team was gathering, I had to do a double take before I realized that she was actually there! As you can see, I was really happily surprised and touched!

Thanks to my friend, Sarah Frechette of Pikku Arkki Valokuvaus, for capturing this moment and for the photo below of some of our team before the walk!

I was a bit worried that I might not be able to complete the 5K walk so soon after having had a treatment. However, I managed to do it even while pushing Leila in the stroller most of the way!

As we were getting ready to head home after reaching the finish line, the MC for the walk started announcing prizes for the biggest teams. I hadn't even considered that ours would be in the running, but a friend called my attention to the fact that the third place team only had five people. It turns out that we got second place! So I received a gift basket of Avon and Marimekko products for organizing the team- another unexpected, exciting moment in an already emotional day!

Although all these events kept me busy, the most tiring part of the last few weeks was actually the day-to-day effort of taking care of the girls. As those of you who are parents know, taking care of two small kids is work enough in itself. However, if you are sick or feeling generally tired or unwell, it's exhausting. It was all the energy I could muster just to get through each day on my own. (There were a few in there when I thought I really might not make it!)

So I'm extremely pleased/relieved/grateful that the girls have started daycare. We eased into the new routine starting last week by having me stay there with them for parts of the last four days. Since everything went well, today they will go for the full day on their own. This means that after tomorrow's chemo treatment (my third), I'll be able to rest a bit before they come home. Even more importantly, they'll be out of the house and having fun next week (when I'll be feeling my worst) so that I can focus on recovering. I'm hoping that, by conserving energy during the day, I'll have more to spend with them when they're home in the evenings and on the weekend.

Leila eating lunch on her first day at daycare.

I won't be able to keep up this level of activity in the coming months, especially with cold season coming on, but I'm thankful that I was able to muster the energy for so much this month. Despite the challenges, it was a great end to the summer!

August 8, 2011

Hair today, gone tomorrow, Part 2

So, I got pretty tired of watching giant fistfuls of hair falling out. It was messy, as it created giant tumbleweed hairballs roaming the floors, but the emotional trauma was worse. Of course, I knew full well that my hair would probably fall out, but the knowledge didn't seem to have any impact on my emotional ability to cope with it.

It wasn't so bad at first, but it seemed to get faster and faster and more and more every day. From Friday to Saturday (the day after I posted the photo of the sink), I lost enough hair to fill an entire gallon size plastic bag! That was truly shocking for me. (Sorry for the visual, but I have to share.... Every time I washed my hair, I could feel giant clumps travel down my back and legs- so creepy!) Plus, it seemed that the "little" that was left had changed texture. It was thin, limp and stringy and looked awful even after just washing it. So I decided that was enough of that.

My friend, Julie, emailed me and offered to cut or clip my hair for me. Since she uses clippers to cut her husband's and son's hair, she was comfortable enough with using them to lend me a hand. (Never having shaved my own head before, I wouldn't dream of attempting it myself!) I decided to take her up on it.

Julie came over on Sunday morning, and we set up shop in the bathroom to minimize the mess.

First, Julie cut off all the remaining long hair with scissors so the clippers wouldn't get blocked up. In seeing the clippings, there was actually more left than I had thought!

Then Julie shaved the hair to a bit more than 1/2 inch. That seemed a bit long so we did another pass to make it shorter. Even though I never really wanted a buzz cut, it did somehow look better a bit shorter.

Here I am modeling the "do" on my balcony and trying to look happy about it. "Fake it until you make it," right?

The side view:

While I'd still rather have my normal hair, the buzz cut doesn't look as bad as I thought it might. Luckily, as some friends have pointed out, my head is shaped well so it looks smooth with little hair. It's also now possible for me to put on my cute new wig without so much work. So I've now got two options for hairstyles!

Although the hair continues to fall out, the little pieces don't bother me as much as the long ones. Plus, the buzz cut makes for a good transition between lots of long hair to none. Hopefully the remaining hair loss won't be nearly as hard, and now I can rely on my darn cute wig to make me feel less like a cancer patient!

August 6, 2011

Even with cancer, everything is relative

While I've been doing my best to stay focused on my fight and positive about a successful outcome, there are days when I just want to feel sorry for myself that I have to deal with any of this cancer treatment stuff. Then I hear about someone else who has/had it worse than me, and I feel guilty for complaining... Of course, I know I need not feel guilty since it's awful that I or anyone else has to go through fighting cancer. I should be entitled to a little self pity. However, these stories do lend perspective and remind me that, if someone else (with even more difficult odds than mine) can keep fighting, so can I.

My friend's dad is battling stage 4 liver cancer. It's now too late for chemotherapy, radiation or pharmaceutical treatments. So I'm trying to feel "lucky" (as lucky as one can be with cancer) that my surgical outcome was good and that I'm going through the hell of chemotherapy mainly as insurance against recurrence.

I also received an article about a producer on NPR's show "Car Talk" whose son was BORN with cancer:
Henry was diagnosed with cancer the day before he was born. For any of you out there who have dealt with cancer I don't need to tell you that cancer sucks. Big time. The doctors told us that the tumor in Henry's spine was growing so rapidly that he had to begin chemotherapy immediately. That meant delivering him early, a month before his due date.

Henry began chemo when he was just one day old.

We were incredibly fortunate to live near one of the best childhood cancer centers in the country, the Dana Farber Cancer Institute and Children's Hospital Boston. Henry had an amazing team of doctors and nurses who guided us through the months of chemotherapy, the hospital stays, the infections and blood transfusions, and all the scary stuff that goes along with cancer.

See what I mean? Can you even imagine? As if it's not traumatic enough to be born a month premature, he had to start his tiny life with chemotherapy. Henry apparently just turned 6 and is a happy, healthy, normal boy. Surely, if Henry can get through it, I can, too. So the fight goes on...

August 4, 2011

Round 2- Done and dusted!

So I'm officially 1/3 of the way through chemo treatment now. It still leaves a lot to go, but I'm trying to look at it with the glass is half full (or 1/3 full, in this case) perspective.

Everything went pretty smoothly today. There were only a couple minor glitches. Elisa wasn't too happy about being babysat by someone other than a family member (but Leila did really well and even put herself down for her nap)! Also, the outpatient chemo rooms were full when I arrived for my appointment so I had to wait for people to clear out and then wait my turn to get hooked up. So I was about 40 minutes behind schedule, which was a little frustrating since I left an unhappy Elisa to race to the Cancer Clinic so I wouldn't be late...

The good news is that I was fortunate enough not to have any severe reactions this time either. Plus, I had the fabulous company of my friend, Vanessa, who even brought me a tasty, healthy lunch since I didn't have time to eat lunch at home beforehand. She also escorted me home to be sure I got here safely. (Thanks, V!)

Since the treatment, I've had the same side effects as last time. I'm a little red and hot all over like I have a sunburn. Any places with rapidly regrowing cells (like the inside of my mouth, my scalp, my stomach and my surgical scar) are all burning and tingling. I actually forgot to list these side effects in my laundry list blog post since they only lasted a few days last time. Also, the joint pain after the Neulasta shot definitely masked any more minor pain/discomfort!

As I'm now taking the steroids prescribed for just before and just after the treatment, I've got a buzz of energy that's a bit like drinking too much coffee. Although my body is tired, my brain is working triple time so I'm not really able to relax and rest. However, once I stop the steroids, I'll likely have the same crash of fatigue I had last time and will spend a lot of time sleeping to recover.

Oh, and the massive hair loss continues. Although I knew it was coming, it is still hard to watch. Last night, I brushed my hair before bed so I could remove any loose hairs before they ended up in my bed. I did it over the bathroom sink to contain the mess, and here was the result:

Not pretty. It looks like I trapped a giant, furry rodent. Although I know that the loss is temporary, and I have a super cute wig to wear when my hair is gone, it's still a bit sad. :(

So that I don't end on that depressing note, I'll mention my other good news of the day. I went to the pharmacy to buy my Neulasta shot for tomorrow. The pharmacist suggested that I take 3 doses (the maximum at one time) so I'd only have to pay my co-pay once. So I ended up getting nearly 4000 euros of medication (they're 1300+ euros apiece) for just 3 euros! Thank you, socialized medicine!!

August 2, 2011

Hair today, gone tomorrow

I haven't really been thinking of myself as a cancer patient. Since I got over the initial shock of the mastectomy, healed from the surgery itself and got fitted with a prosthesis, I have felt and looked more or less like my normal self. However, things are about to change.

On Thursday evening, I noticed that my hair was starting to fall out. It wasn't all that much, just about the amount that would fall out on a normal day post-pregnancy (for those of you who can relate to that). So I've been extra gentle with my head/hair in the hopes that the loss would be slow. However, my scalp has been tingly and itchy and irritated, like I can almost feel my hair follicles dying off. Each day more and more hair has been falling out, and today it was giant handfuls. It was really quite shocking.

I saw the doctor today for my pre-chemo check. She said that the rest of my hair will probably fall out quite quickly after the upcoming treatment. Her guess was within a week all my hair would be gone! So, although today I don't look so different from my normal "me," the change over the next week may be pretty radical. Without any hair, I think I'll look and feel a lot more like a cancer patient.

As I mentioned yesterday, I've been trying not to think or complain about my ailments in the hopes that I'll convince myself I feel fine. However, I really don't feel fine. I don't want to moan and groan about it all the time, but I decided it's time to share what it's like so that hopefully people might understand a little how I really feel. Plus, if I explain it here, I won't have to repeat it to every person who asks, which saves me from feeling like I'm dwelling on it.

Thankfully, the first round of chemotherapy was not as terrible as I anticipated. I had a few really, really bad days, but the most difficult side effects have been getting slowly better since the treatment. The lesser side effects are annoying (especially when having to deal with them all simultaneously) but survivable. Although I have less energy than normal, I have still been able to be active and do many of the activities I would do if I weren't undergoing cancer treatment. However, some of the chemo side effects are supposedly cumulative so I'm not looking forward to feeling worse after the successive treatments.

Basically, for any of you who have been pregnant, many of the chemo side effects mimic how one feels during pregnancy and/or breasfeeding but to the extreme. On the worst days following the treatment, I was completely, totally exhausted- so tired I felt I could sleep for days. I was horribly thirsty. Despite drinking water constantly, I couldn't quench my thirst. Of course, the follow up to that was that I was also peeing constantly. (Sound familiar, pregnant friends?)

There were days when I didn't really feel like eating anything and others when I thought I could eat an elephant. I've been craving all kinds of comfort food and sweets. Unfortunately, the chemo numbs your entire mouth so nothing really tastes like anything. So, even if I'm full, I sometimes keep eating because I haven't really tasted what I've eaten. That, and the fact that the chemo messes up your whole digestive system, means that I've been gaining weight. As if I needed something else to worry about right now, I have to think about how to prevent myself from having to wear my maternity clothes again just for something comfortable to wear!

Then there's the heartburn. I had it during my pregnancies, but this is much, much more painful and constant. I basically cannot function without heartburn medication, which luckily my doctor prescribed for me. The other gastrointestinal problems are there, too, but I'll spare you the details...

Chemo brain is worse than pregnancy brain. Ordinarily, I'm organized and know where things are and what I'm doing. On the worst days post-chemo, I could barely remember how to walk. Every movement and every thought took SO MUCH EFFORT, which added to the exhaustion, and I couldn't remember a damn thing. It was shocking to me that I just couldn't get my brain to work at all. I guess it's probably part of the body's defense mechanism when it's going through such a systemic assault- just shut down so we don't have to think about what's happening to us. It's gotten slowly better as days go by, but I still feel like I'm walking around in a fog.

My whole body is dry- my skin, my hair, my scalp, my nails, my mouth, my lips, my nose. My nose was so dry that I was getting nosebleeds some days. I'm lathering on lotion constantly, applying lip balm, nail and hair conditioners and using products (toothpaste, mouthwash, faux saliva) to try to combat the dry mouth. However, nothing really does the trick. It all lessens the dryness a bit but doesn't eliminate it.

During the days when I had the biggest strain on my immune system, I had all the symptoms of a cold or flu- sore throat, runny nose, watery eyes, earache, headache. I also got sores in my mouth, which were awfully painful. Luckily, those symptoms all passed within several days, but I was pretty miserable with those on top of everything else.

In addition to the fatigue, my other biggest challenge has been the joint pain. To boost my body's white blood cell production to make up for some of the ones the chemo is killing off, I'm taking a drug called Neulasta. It super charges the bone marrow to make more white blood cells, and, in the process, makes every bone ache. The day I had the shot the pain started in my knees. On the following day, it was my knees and elbows. Then every single joint and bone in my body- even ones I never really noticed were there. The pain was manageable with medication but still exhausting. It's been getting better as days go by so I'm really not looking forward to going through it all over again in a couple days.

So that's the laundry list in a nutshell. If you ask me how I'm feeling, I'll probably just say "Okay." It's just easier than explaining every issue I have, and I don't have to listen to myself complain about it all again. However, now you'll know the REAL story.

August 1, 2011

It's the little things that break my heart...

Some of you might recall Leila's earlier fascination with nipples. Once she learned what hers were and that everyone has them, she would frequently point out that, "Leila has two nipples, Daddy has two nipples, Mommy has two nipples, and Halisa (aka Elisa) has two nipples. Everybody has two nipples!"

The other day Leila saw me getting dressed and asked me about my "ouch" (surgical scar). While she's seen it before, I think she got a better look this time and had a serious concern. She said (pointing at my right breast), "There you have one nipple, but where is your other nipple?"

My heart sank at the thought of having to try to explain it to her. I knew I needed to be honest with her, but how the heck do you explain this situation to a three-year-old?? So I told her that my breast was sick and that it had to be taken away and that the nipple was taken away with it. She pondered that for a minute and then asked, "Then later you can get a new one?" I guess, in theory, I can. However, I was told I have to be cancer-free for 3 years before they'll consider any reconstruction...

Tonight she put up a huge fight about going to bed. I explained to her that I'm really tired and that I need her to be a good helper and go to bed. She asked if I am tired because I'm sick, and I said yes. Then she asked, "So you will get better soon, and then you won't be tired anymore?" I had to tell her it's going to be a while before I'm better.

Although I've been conscious of these facts at least since my surgery, I haven't been dwelling on them. I've been trying to focus on moving forward and doing what has to be done to get well. I've been ignoring my symptoms and pretending that I feel fine, in the hopes that pretending will make it true. However, having to explain the reality to Leila made it all the more real... and heartbreaking.