December 14, 2011

The gift that keeps on giving...

It's been a while since I've had time to post anything. The last few weeks have been pretty busy, and blogging hasn't seemed as urgent since the official end of treatment. However, just because I'm done with treatment doesn't mean I'm able to resume normal life just yet. So I figured it would be helpful to fill you in on the reality of things, especially for those of you who are far away and haven't seen or spoken to me lately.

I was really surprised to find that a number of the chemo side effects didn't actually START until between the fifth and sixth (aka last) treatment, and some continued to get worse even after treatment ended. My best guess is that some of the cumulative effects finally built up to a critical level during the last treatments, and it might be for this reason that many treatment regimens stop after six. Perhaps that's the threshold where chemotherapy's toll on the body outweighs its cancer-fighting benefits.

The downward spiral started with the loss of my eyelashes and eyebrows. I knew that it was possibly/likely that they'd go, but, when it didn't happen after the first four treatments, I thought I might have escaped that fate. No such luck. By the end of treatment, I had about two lashes under each eye, and only slightly more above. I had almost no eyebrow hairs on one side and few enough to count (but I didn't actually want to know) on the other. I never really thought about how helpful eyebrows and eyelashes are until they were gone! Eyebrows do a great job of keeping sweat and shampoo from running into your eyes, and eyelashes really do help keep the dust out. Plus, having lashes fall out so quickly meant that I had one in my eye continuously, which was a real pain! Luckily, they are FINALLY starting to grow back now.

I had a tingling sensation under my fingernails and toenails after almost every treatment. However, that got worse as time went on. By the end of treatment, my nails (especially on my toes) were lifting off the nail beds at the ends. It felt like someone was jamming razor blades under my nails. The nails didn't actually come off entirely, as I've heard happens to some people, but they sure felt like they might. I even have blood trapped under one toenail, which seems to indicate that it lifted off enough to be bleeding under there...

My nails are super thin and bendy. Anytime I catch a nail on something, it bends backwards and hurts like hell! They're also quite yellow and have ridges like a Ruffles potato chip. Come to think of it, the eyelashes that remained were also quite wavy. It's almost like you can see when the treatments happened and slowed the growth and when growth resumed between/after treatments.

Chemotherapy causes super dry skin, but that has also been aggravated by dry, indoor climates. My skin has been so dry and thin that any firm pressure causes it to tear. So I've got constant paper cuts and scratches, especially on my hands.

My taste buds are getting slowly better, but I continue to have a bit of a dead mouth feeling. Some foods still don't taste like I know they should. I'm still attempting to eat a lot of spicy/spiced foods in order to taste something. I'm praying that my mouth starts to bounce back a little faster because I know I'm eating too much in the hope that I'll eventually taste it!

The treatments also cause menopausal symptoms because the chemotherapy drugs damage the ovaries. These are actually some of the most annoying continuing side effects. I have alternating hot flashes and cold sweats, and they seem to be totally random. So I'll be just sitting on a bus or something and break out into an intense sweat, but other times I can run to catch a bus and not sweat at all! So weird and SO annoying, especially in cold weather. I'm also more irritable and moody (a la PMS but worse), but some of that might be aggravated by the short, dark winter days.

During my last appointment with the oncologist, I asked about whether there was anything I could do to manage some of the menopause-like symptoms. She said that the medications often used are only really effective for about 30% of women. So her suggestion was to wait and see if the symptoms get better with time since it takes several months for the effects to reverse. It's going to be a long wait...

I'm also waiting for the "chemo brain" to improve. It's maddening not to be able to remember things that happened 15 minutes ago or to be able to access information in my head that I KNOW is there. For example, I had to take another Finnish course placement test on Monday, and it was terribly frustrating. There were so many words that I used to know well that I just could not recall. They were so familiar I could almost see them, but I couldn't actually grasp them. I know that these issues generally get worse with age, but I'm not ready to deal with them just yet since I'm not even 40!

The one area where I've actually seen improvement since the end of treatment is my hair. It's really thickened up a lot, especially in the last couple weeks. It is not much longer, but it is much fuller. You can't see my scalp any longer, which makes me feel like I look less like a cancer patient. I'm anxious for it to grow long enough to actually style and look hopefully more feminine, but I'm happy for the progress.

I'm planning to take things easy for the remainder of December and to enjoy the holidays and my vacation to California. After we return in January, I really hope to get life back on track in some kind of normal fashion. Even if things won't be truly back to normal, I'm at least going to focus on maintaining a routine and improving my health. I'm hoping to start an intensive Finnish course (hence the placement test) and join a gym. Hopefully, one baby step at a time, I'll get my life back.



November 23, 2011

Giving thanks

Since tomorrow is Thanksgiving, I figured it is a perfect time to reflect on some of the things I'm grateful for this year. Of course, I'm not glad I got cancer. However, even given that reality, there are still plenty reasons to give thanks. There isn't room or time to mention everything for which I am grateful, but here are some of the highlights.

I am thankful that:
I found the tumor at all but especially in time to do something about it.
The diagnoses of my two friends prompted me to get the tumor checked, even though I was sure it couldn't be cancer...
I had a nice vacation in April before my diagnosis.
My mastectomy surgery was successful in removing the tumor with clean margins.
My lymph nodes were clear.
My parents were able to visit while I was recovering from surgery.
We got spots in a good, publicly subsidized daycare for both kids and that they are happy there.
I made it through six rounds of chemotherapy.
I have a nicely shaped head. It made hair loss just a little more tolerable.
I got so much invaluable advice and support from my friends who have/had breast cancer.
I had excellent care throughout my treatment. I feel truly blessed to have had such caring and competent surgeons, oncologists, and oncology nurses.
Nurse Leila caught the cause of my hideous side effects after the fourth round of chemo.
I hardly had to pay anything for all that outstanding care.
I have so many friends who stepped up to give their support in a variety of ways: accompanying me to chemo, preparing meals, taking Leila on outings, babysitting, checking in on me, distracting me, visiting me, sending care packages and emails/cards/texts of good wishes, and much more. THANK YOU ALL!!!
My husband still finds me attractive after all I've been through...
I don't have to do radiation or additional Herceptin treatments so I am officially done with cancer treatment just in time for the holidays!!
I get to spend Christmas and New Year's in California with my family.
I can "start over" in 2012.

I am also incredibly thankful for my two sweet daughters. Although it was hard work to fulfill parenting duties on top of cancer treatment, having that to focus on was good distraction. They have both done so well throughout this process, and I hope they will be stronger for it in the long run.

On that note, I have one more thing to mention. Both girls stayed home from daycare today because they had dental check ups. Of course, I'm thankful that we all survived the appointments and that both girls have healthy teeth. Moreover, I'm so happy that Elisa chose to take her first steps today while home with me instead of at daycare! I've missed a lot over the last six months and am thankful I didn't miss this:


I wish everyone, near and far, a very happy Thanksgiving surrounded by family and/or friends. Thank you for being a part of my life.

November 3, 2011

It ain't over until the fat lady sings!

Forgive me for not sounding overwhelmingly excited today. Although yesterday was my sixth and last chemotherapy session, I don't yet feel "done" with my cancer treatment. First of all, sitting in a chair with an IV hooked up to my arm isn't the hard part. The worst is yet to come when all the side effects hit like a ton of bricks over the next few days. So I feel I'll be more able to celebrate (at least the end of chemo) after I'm through the aftermath.

Secondly, I have a meeting with the oncologist on November 22, when it will be decided what steps are next. I'm actually dreading that appointment. When I got the original pathology results on my tumor, the surgeon told me I would need chemotherapy but not radiation. However, when I met with the oncologist for the first time, she said, "Well, we might want to do radiation. We'll see." So there's a possibility that she'll decide on the 22nd that I should do it. That would be 5-6 weeks of daily radiation appointments. (Crap.) In addition, the nurse yesterday mentioned that the oncologist may also encourage me to do Herceptin treatments every three weeks for the next year. (Double crap.) Of course, I want to do whatever will give me the best chances of survival and will minimize recurrence, but I've honestly had it with this torture and would like to avoid any more, if not absolutely necessary.

Plus, I really, really wanted to be done with my treatments before we leave for the US in December. I was so looking forward to being able to enjoy the holidays with my family and friends without a black cloud of additional procedures hanging over my head. I wanted to come back in January and start over with trying resume a "normal" life (although I'm not really sure what that is now...).

So a lot is hinging on that oncology appointment. I even tried to move the appointment up to get it over with sooner, but there were no availabilities before that date. I just have to wait.

Mentally, it's also hard to wrap my head around the fact that my routine for the last 5+ months is over. Odd to say, but when the majority of my recent life has revolved around this every three week schedule, it seems a bit strange not to have that anchor anymore. There was something predictable and stable about the routine, even though parts of it were miserable.

NOW what do I do? Of course, I have a million tasks that have been piling up waiting for me to feel better. Before my diagnosis, I also had plans to take intensive Finnish classes and look for a job. However, all these things now seem so overwhelming (and many so tedious) that it's hard to fathom where to start.

I saw this quote today, which seemed fitting:
The things we can't change
The last 6 months certainly have changed me profoundly- physically, mentally and emotionally. I honestly don't know who "I" am anymore. Of course, I'm still a woman, wife, mother, friend, public health professional, etc- just not the same ones I was before. It's going to take me some time to redefine myself and find a new "me." Once I make some progress on that, I might feel like my time as a cancer patient is finally behind me.

I appreciate everyone's support throughout my treatment so far, and thank you for all the congratulatory messages. I just hope you can all understand why I'm not yet jumping for joy. Hopefully, that time will come soon, perhaps even by the end of the month. Meanwhile, please continue to lend your encouragement as I enter this next phase of my recovery. Somehow I have a feeling that the emotional healing will be an even greater challenge than the physical.

However, so that I don't end this post on a low note, I'll share another great quote I read today. I don't quite know if I can do this, but I'm sure as heck going to try. In the same vein as trying to seize the day and make the most of the present, I'm also going to try to be happy in whatever state I'm in currently. "Fake it until you make it," right?

Be happy

October 19, 2011

No matter what you already know about breast cancer, READ THIS.

October is Breast Cancer Awareness Month. Being in public health and part of many health education campaigns, I've known that for a long time, but I have never been more cognizant of it than I have this October. It takes on a whole new meaning this year and not just because of my own diagnosis. When two of my friends were diagnosed just five months before me, I didn't realize how UNaware I really was about my own risk. How could I know so much about disease risk and health promotion and not know THIS?

Therefore, in honor of this month, I'd like to share my story and what I've learned so that others will be truly informed. No matter what you think you already know about breast cancer risk, you probably don't know about this. Of all the people I've told so far, NO ONE has told me, "Yeah, I already knew that!" I cannot understand how such information isn't more widely discussed, especially in my generation. So please read this post and share with as many people as possible. If there's any good to come out of this horrible year, let it be that everyone I know tells everyone they know so that no one else in their circle is caught unaware.

Back in early January, one of my close friends in Finland informed me that she was just diagnosed with breast cancer. Needless to say, I was shocked. It wasn't so much the diagnosis as it was the circumstances. After all, I've known several people with breast cancer, but none were ever in my circle of friends and certainly not the same age as me. However, I chalked it up to being a really unlucky, one-off kind of event.

Then, the following week, I got an email from another good friend who had just moved back to the US from Finland. Her email explained how she was just diagnosed with breast cancer, and I nearly fell out of my chair. I couldn't comprehend how now TWO of my friends could have breast cancer and was grasping at anything that could explain how this was possible. I rationalized that, in the second friend's case, it must have been genetics because her mother had had breast cancer. But STILL.

In late March, I found a lump on myself. At that point, Elisa was six months old and still breastfeeding quite frequently. I had been out for several hours and was way overdue to nurse her. While I was getting ready to feed her, I saw and felt this hard mass pop up along the surface of my left breast. I assumed that it must be a clogged milk duct from going so many hours without breastfeeding and expected that it would just go away once Elisa's normal nursing schedule resumed.

Even though it was less noticeable the following week, it was still there. However, we were about to leave for a month long trip to California, and I didn't see how I was going to find time to get it checked out before we left. Since it wasn't painful and seemed smaller than when I noticed it, I decided to wait to see if it would go away on its own. I figured that, if it wasn't gone by the time we returned from the US, I'd have someone examine it then.

I was well aware of the lump's presence while we were away and even mentioned it to my mom and one sister, who were both concerned. However, I was still convinced that it was somehow related to breastfeeding. Plus, I figured that there wasn't much I could do about it while on vacation anyway. So I tried not to think about it too much, but the fact that it had not gone away after a month was nagging at me.

We got back to Finland on May 9th, and I went to see a doctor at the health center on May 10th. The doctor took my concern very seriously, or perhaps she actually suspected that it was truly serious, and went to a lot of effort to get me in for an ultrasound the following week (the 17th).

After doing the ultrasound, the radiologist suggested that they do a mammogram. Then a doctor came in and told me they wanted to do a biopsy. She said that, no matter what the lump was, it would need to come out. At that point, I was still sure it was something benign, although I was stressed about the idea of surgery regardless.

The next week (May 24th), I went to another doctor at the local health center to receive the biopsy results. I still thought it was so unlikely that it could be cancer. I remember thinking that it would just be coincidentally impossible, and maybe even statistically improbable, that my two friends and I could all be diagnosed with breast cancer within 5 months of each other. So when the doctor confirmed that the lump was malignant, I was so stunned that I couldn't even react. I cried, but it wasn't really about me. I just could not fathom how the result could even be possible.

I was immediately referred to the breast surgeon the following day. After her exam and a discussion of the findings and the requisite surgery, my first question to her was, "How can this be?" I told her about my friends and how similar we are: all 38 or 39 years old, with (at the time) 2-year-old daughters, who lived in Finland at some point. She carefully explained that the most likely common denominator was that we all had children, particularly our first child, in our mid-30s.

My thought was, "Huh, what? Since when is that a risk?" The majority of women I know waited until their 30s to have kids, and I'd never heard any mention of breast cancer risk. In fact, when I was pregnant, I heard about nearly every other risk imaginable except breast cancer!

Because I turned the magic age of 35 when pregnant with Leila, every nurse and doctor I saw in the US commented on the fact that I was of "advanced maternal age." The number of times I heard that phrase was actually annoying. I recall thinking how ridiculous it sounded since I didn't feel all that old. It made me feel like I was 60 and trying to have a baby.

I was sent for additional fetal screenings and an appointment with a genetic counselor. On top of the risks for chromosomal abnormalities, I was warned about miscarriage, gestational diabetes, high blood pressure, pre-term labor, placenta previa, and low birthweight. Never one word about cancer.

So when the breast surgeon talked about how my tumor was likely brought on by being pregnant in my late 30s, I couldn't understand how I'd never heard this before. As a health educator, I thought I knew who the high-risk populations were. In my experience, they certainly weren't healthy women under 40 with no family history. I'd even heard that women who never have children could have a higher lifetime risk of breast cancer because having children had a protective effect. So, how could my risk possibly be elevated by having kids?

The health educator in me took over. I had to figure out if this information was out there in general circulation or even in the research literature. Lo and behold, it was. However, in most of what I read, it was certainly not highlighted. It was mentioned as more of an aside and buried further down on the list than most of the risks I already knew. The most succinct and clear explanation I've found so far is this:
http://ww5.komen.org/BreastCancer/NotHavingChildrenorHavingFirstAfterAge35.html

I don't know about you, but I found the lack of information and discussion on the topic shocking and infuriating. In this era, when women are waiting longer to finish their education or start a profession before having children, why is this not a priority issue? Maybe the increased risk of breast cancer due to pregnancy after 35 is still relatively small compared to the other things on the laundry list I was given when pregnant. However, I still wish I had heard it then.

Knowing of the risk before now would not likely have changed my decision about when to have children. What it would have done is made me more vigilant, on my own behalf as well as on behalf of my friends.

As much as I try to practice what I preach about health screenings, I confess that I haven't always been so consistent with my breast self exams (BSEs). Since I considered my risk to be so low, especially before the age of 40, I have only done them a couple times a year. I don't think I've even done them that frequently over the last three years since pregnancy and breastfeeding changes breast tissue so much. However, if I had known of this risk, I would certainly have been more systematic about it. If I had actually believed in the possibility of finding something, maybe I would have found the lump earlier. Maybe I could have even avoided having to have a mastectomy. It's impossible to say exactly what might have happened, but I do know I would have been looking.

Even though I didn't find the lump until it was large enough to discover by chance while breastfeeding, I'm "lucky" that it seems to have been soon enough to save my life. My two friends were similarly "lucky" to discover their tumors in time. However, I'm sure there are many women out there who missed theirs because they simply didn't know how hard they should be looking.

If anyone you care about has been pregnant in their mid-to-late 30s (or later), please share this information with them. Please urge them to do their BSEs regularly because there is a chance that they might actually find something. If they do, you would want to be sure they have as much time as possible to get it evaluated and dealt with, if necessary. You wouldn't want their chances to be riding on luck.


P.S.- A number of women have told me they don't know what they are looking for when doing a BSE. I'm not sure I truly did either, but, when I did find something, I knew it was wasn't supposed to be there. Just try to know what is normal for you and keep looking for anything that changes. I thought this was a good illustrative guide: http://www2.breastcancercare.org.uk/sites/default/files/ybyh_quick_guide_web_2011.pdf
If you find something/anything, have a doctor evaluate it so you can act in time if it really IS something.



October 14, 2011

Thank heavens for Leila!

It's not the Leila you're probably thinking of (my daughter), although I'm awfully glad to have her, too. Today I'm especially thankful for Leila, the super kind and helpful oncology nurse at the Cancer Clinic.

She was the chemotherapy nurse I had for my first treatment. We seemed to develop a rapport once I told her that my daughter's name is Leila, too. You see, there are fairly many Finnish Leilas in the generation of women in their 50s and 60s but not so many little Leilas. So whenever I meet an older Leila and tell her about my daughter, she usually seems pretty tickled that there's a new generation of Leilas coming along!

Anyway, you can probably imagine how crazy nervous I was at that first chemo treatment. However, Nurse Leila was extremely calm and patient in explaining the hundreds of things that were happening and all the details that I needed to remember. She answered all my questions thoroughly and continuously checked on me throughout the process to be sure I was doing okay. She seemed genuinely concerned for my personal well-being and not just in getting me through that treatment so she could move on to the next patient. She even suggested that, while I had a break between the Herceptin and the Docetaxel administrations to check for reactions, my friend Vanessa and I go downstairs to the cafe and try to have some lunch. Leila was all-around a caring, thoughtful nurse, and she even spoke very good English (a big bonus in these situations)!

Although I've seen Leila nearly every time since, she hasn't been personally assigned to me again until this most recent treatment (the fifth). I was actually kind of relieved to have her this time since the fourth treatment was so rough for me. I felt a bit more relaxed having her there since I know she's so competent. Even the friend who kept me company this round noted how good Leila was.

As we got started, Leila asked me how the fourth treatment went and what I discussed with the oncologist last Friday. She listened very carefully and asked me additional questions, especially about my comments regarding feeling unable to stay in one position very long. Apparently, one of the anti-nausea medications causes "restlessness" in some patients. So she suggested that I not take that drug and instead substitute another, which she gave me so I wouldn't have to go to the pharmacy for it. She also said it has a bit of a relaxing, drowsy effect that might help with my ability to rest. Since the oncologist had not even thought of this, I was super grateful that Leila did.

And, voila! I did have some issues with nausea (and vomiting, unfortunately) on Wednesday night, probably because I didn't manage to take the anti-nausea meds before I really felt nauseous. I then took the drugs and went to bed at 8:30 pm and woke up at 6 am on Thursday feeling okay. I was moving a bit slowly but otherwise alert and calm. I even managed to do my presentation at the American Women's Club meeting and join some friends for lunch afterwards!

Today, Friday, which was my worst day last time, has been generally okay. Of course, it helped quite a bit that the girls were in daycare this time. However, I think the real saving grace was that change in medications that Leila suggested. I still have the fatigued, headachy, queasiness like during a hangover, but this time I've been spared the 40-week pregnant and jet-lagged part. It's still no picnic, but I don't feel like I might rather be dead. I managed to watch a little tv, read some of my book and take a nap so that was a vast improvement from not being able to do ANYTHING the last time.

So, again, I'm extremely thankful for Leila today. The fact that she listened carefully enough to my symptoms to catch something important and took steps to correct it has made a huge difference in my ability to cope this time. I'm not nearly as fearful of finishing out this treatment cycle and undergoing the next one. I think I'll have to be sure to find Leila next time and let her know how much she helped me. THANK YOU, LEILA!!

October 11, 2011

Carpe Diem!

On the eve of my fifth chemotherapy treatment (of six), I'm trying to keep the dread at bay by reflecting on all the good and fun things I have done over the last three weeks. Some of the highlights were: the AWC Gourmet Group lunch, visiting my friend (who lives in Australia) while she was in transit through Helsinki-Vantaa, a trip to Linnanmaki, Stockmann's Crazy Days, two girls' nights out, a pedicure, Pilates, and several knitting groups, playgroups, and coffee and lunch dates.

A number of people have asked me why I try/how I manage to do so many things when I'm sick. The short answer is, "Because I can."

Those of you who read my previous blog entry know how unexpectedly horrific the last treatment was- both physically and mentally. I feel like I got a glimpse of what it might be like to be in solitary confinement because I couldn't go anywhere and couldn't do anything but lie in bed in the dark and stare at the ceiling. I was trapped in my misery and could not even escape my stressful thoughts.

Therefore, the last three weeks between treatments have felt to me like someone said, "Okay, we'll let you out of solitary for a few weeks, but then you have to come back." If it were you, what would you do? Would you spend those three weeks lying on the couch watching awful daytime television? It might be worth doing that for a day or so, but then my guess is that most people would do what I did: LIVE LIFE. Seize each day and make it count. That way, if/when I'm feeling miserable after this treatment, I can look back on all the fun I had and know I made the most of the time I had when I felt well. I can also look forward with the hope of doing more of those things once I get past the worst of it.

The funny thing is, this is actually how I used to live my life before I had a husband and kids. (It's just a whole lot harder to do when you have a family, a routine and commitments to other people...) Those of you who have known me since the pre-Gmail days know that my part of my email address used to be (and part of my Skype handle still is) "carpediemgirl." I really tried to seize every potentially good opportunity that came my way and pushed myself to experience life. In fact, it's that mentality that took me to Mozambique and then brought me to Finland.

While going through cancer treatment, I've generally felt totally unlike myself. However, this one aspect has reminded me of an important part of my real self that I need to reclaim and continue, even when the treatment is over. So I guess I have cancer to thank for reminding me to live life to the fullest while I still can. I'm hoping that, by reading this post, some of you will be convinced to do the same but without having to go through the cancer part!

September 27, 2011

Back in the Saddle Again...

Whoa. This last treatment really threw me for a loop. For those of you who didn't know, I received a new drug cocktail this time. The first three treatments consisted of one drug (docetaxel/Taxotere), and the second set of three treatments are a combination of three (cyclophosphamide/Cytoxan, epirubicin/Ellence, and 5-fluorouracil/5-FU, otherwise known as CEF).

So, although I had adjusted (as much as one can) to the previous chemo treatments, I did not really know what to expect from this last one. It was like starting all over again, and it turned out to be much worse than I anticipated so I was wholly unprepared to cope. I'm going to relate all the nitty gritty details here so I remember for the next time and can prepare myself and others in advance. Sorry, this is gonna be looong!

With the first 3 treatments, I felt pretty much fine the first few days after the administration. Then around the fourth or fifth day after treatment, the side effects would really kick in. I was still functional but just very, very tired on the worst days. Resting and sleeping helped a lot, though. I also had an assortment of side effects (see post from August 2), but I could manage those okay with some basic prescription and over-the-counter products.

Immediately after this last treatment, I felt like someone had punched me in the stomach. It was more pain than nausea, but it was fairly strong. I was a little more tired than usual later that evening but otherwise okay. During the day on Thursday, I had a hard time sitting still and felt very tired and uncomfortable, but I still managed to get out. I also noticed that I was pretty queasy while riding the bus that day, but I was still able to eat normally.

Then, early on Friday morning, all hell broke loose. The best comparison I can make is that it was like being 40 weeks (aka 9 months) pregnant with a hideous hangover and jet lag at the same time. I honestly do not recall a time in my life when I felt so completely and utterly horrible!

After going to bed around 10:30 pm, I woke up- WIDE awake- at 2:30 am Friday morning. I had a miserable time trying to get back to sleep. I couldn't get comfortable enough in any position to relax and get my mind to realize that I needed to fall asleep again. My stomach was queasy, everything was achy, and I had to pee every 10 minutes. I'm seriously not exaggerating- EVERY 10 MINUTES! This lasted until about 4:30 am, when I decided to take a melatonin tablet to try to trick my brain into sleeping. Thankfully, I then managed to sleep from about 5 to 7 am, when the kids got up.

I was totally incapacitated throughout Friday. I couldn't eat due to my uneasy stomach, ached everywhere, was exhausted from lack of sleep and had to pee constantly. The worst part was that I was just not comfortable in any position- not laying down, not sitting, not standing- for more than 15 minutes at a time. So I really couldn't rest or sleep because I had to continuously change positions (and pee). My vision was blurry so I also couldn't read, watch tv, look at the computer or knit. I just had to sit/stand/lie there and feel awful (and pee). It was totally mentally exasperating, which didn't help me cope with the physical symptoms any better.

To make matters worse, our daycare was closed on Friday for an inservice training. So, on the day when I felt crappier than ever in my whole life, I had the kids at home with me! We had the option of putting them in a temporary daycare location for the day, but I thought that a totally foreign environment with complete strangers would be pretty stressful for them. Luckily, my friend Pam offered to come help with the kids and saved me. She took them to the park so I could have some quiet and rest, which was the only way I got through the day. I debated whether I should have put them into the temporary daycare, but I believe that they were happier being cared for in a familiar environment by a kind, loving friend whom they've at least met before. See, don't they look happy?


Another friend, Angela, came to help in the afternoon. Miraculously, both girls were asleep for much of the time she was here so she mostly just kept me company. That was a blessing, too, though, because I was then a bit distracted from thinking about how miserable I felt. One can only sit/stand/lie and stare at the walls/ceiling for so long!

Luckily, Matti came home early that day, and his mom arrived in town so they were both able to help the girls through their evening routine. I was so weak and queasy and had to keep going to lie down every 15 minutes so I wasn't able to assist much.

Throughout the day, I was only able to eat a few crackers with peanut butter, a banana, some leftover strata (a bread casserole), apple juice and water. I did try to follow the recommendation to eat very small amounts frequently, but I had a hard time even entertaining the thought of eating.

During Friday night, I woke up at almost 2:30 am on the nose again, in the same plight as the night before. Learning from that, I took a melatonin tablet. It didn't help. So I took another one. (I don't actually know if it's advisable to do that, but I was desperate!) I finally managed to sleep a bit more around 5:15, but I was still exhausted from not enough sleep. Of course, the kids were home all day again because it was Saturday...

Although I felt the tiniest bit better on Saturday compared to Friday, I was still pretty incapacitated. I wasn't able to be up and moving about for more than 15 minute periods. So I alternated between trying to help with the kids when possible (and peeing) and then lying down. I still wasn't able to sleep at all during the day. In addition to feeling physically miserable, I also felt awful that I couldn't be there for the kids. Every time I'd come into the room, one of them wanted me to play with/hold them, but after 15 minutes or so, I'd have to leave again. Leila was pretty understanding, especially given her age and temperament, but Elisa would cry as soon as I walked away. It was heart wrenching for me.

Again, Saturday night, I was wide awake (and peeing) at 2:30 am... I took two melatonin tablets nearly right away, but they did nothing this time. So at 4:45 am I took a sleeping pill and was able to sleep until almost 7:30 am on Sunday.

When I got up, I felt okay. Not good, but semi-functional. So I decided to accompany Leila to her kids' gym class so she could have some attention from me to partially make up for the previous two days of neglect. The class went really well so I was glad I went, but I was totally beat by the time we got home. I managed to nap and was then able to get through helping with the evening routine. Despite still feeling draggy, I at least managed to eat a regular dinner (finally!) and felt a bit more normal.

On Sunday night, I stayed asleep from about 11 pm until 4:30 am, when I woke up completely alert and wide awake. I moved to the couch and tried to read a bit, in hopes I'd get drowsy, but no luck. While considering whether I should take a sleeping pill, Leila woke up crying. By the time I got her back to sleep, Elisa was stirring and making noises. So I decided it was hopeless. So around 6:45 I got up and took a shower and started getting ready for the day.

Here's where the tide really started to turn- finally. Despite waking up at 4:30 am, I felt pretty mentally alert yesterday. So I went to knit at a nearby friend's house, which was just the right thing. It was low physical exertion but social and entertaining. I even managed to finish a small project I started before my cancer diagnosis! That was a great mental boost.

I had visits from two other friends in the afternoon, and that was good for my psyche as well. The social interaction definitely helps distract me from feeling blah.

I also actually felt like eating yesterday. In fact, I ate like a horse. Either I needed to make up for not eating for 3 days, or I was just so excited to be able to enjoy eating again! The only issue now is that my GI system is so confused about how it should be working, but hopefully that will resolve in a day or so.

I wasn't able to take a nap all day yesterday, but I managed to make it through the whole day until bedtime. In fact, I even had a hard time falling asleep. Maybe I was just so relieved to be feeling better that I couldn't settle down. So I moved myself to the couch again so I wouldn't keep Matti up. I finally slept from about 11:30 to 6:30, which is the longest I've slept in 4 days. I've got high hopes that tonight I might get a real night's sleep...

So today I'm just trying to catch up on everything I've ignored for days. According to my chemo veteran friends, once you start to feel better after these CEF treatments, you feel pretty good until the next one. I'm trying to capitalize on that and hope to enjoy the next two weeks as much as I can. So now I'm heading out to enjoy some (rare) sunlight and have coffee with a friend. If you don't see another post from me again soon, it's probably a positive sign! :)


September 11, 2011

In Honor of September 11... a Guest Post!

Unless you've been in solitary confinement for the last three months, you're well aware that today marks the 10th anniversary of the 9/11 attack on the World Trade Center. In honor of remembrance of that day, I'm turning over this forum to my husband, Matti (or Matt, as those of you in the US know him), who was actually in Manhattan on that fateful day.

Although there are so many devastating memories of that day, there are probably equally many or more stories of survival and hope. As these two words have been key in my life over the last few months, I'm trying to focus on those when recalling that day. So today I'm sharing Matt(i)'s account of 9/11 and being thankful that he was far enough uptown to be out of harm's way, or we might never have met!

From Matti:
"It has been ten years since 9/11. By chance, I was on Manhattan on that day. Much has happened in my life since. But clearly the consequences of those attacks are still everywhere to be seen, and I often think back to that day -- even more so near the anniversary. I wanted to write down the following mostly for myself, having noticed I was starting to forget some details.

In 2001, I was a doctoral candidate at Harvard Business School (HBS). On the morning of September 11, I had a meeting with Noel Capon at Columbia University in New York to discuss my dissertation research on global account management.

I flew in from Boston the previous day and spent the night at the Yale Club, next to Grand Central Station. After breakfast on the 11th, I headed west towards Madison Avenue to catch a cab. I remember being annoyed at having to walk around a group of people blocking the sidewalk. They were watching a TV in a store window. For some reason I thought they were watching a tennis game. Perhaps it was a sports store, or maybe it was because the U.S. Open had just been held.

Getting to Madison Ave, I realized people were looking to the south and saw the plume of smoke rising in the air from lower Manhattan. Light brown in color, it did not look at all ominous to me. I figured it was a fire of some kind and hailed a cab to head towards Columbia University.

The cab driver immediately filled me in that the WTC twin towers had been hit by airplanes. That was big news. I think I may have asked whether it might be “just” an accident. The drive north was slow -- almost everyone seemed headed the same way. We had the radio on, and, during the drive, heard that the first tower collapsed. The news became even bigger.

Once I got to Columbia Business School, it turned out that Noel was not going to be coming in. The bridges into Manhattan had been closed before he got on the island. Luckily, I happened to bump into Sid Balachandran, an old friend from HBS (we used to close down doctoral parties together). He kindly let me take refuge in his office, and we tried to figure out what this all meant. It was hard to understand the magnitude of the events happening nearby.

Calls started coming in to Sid from relatives, making sure he was OK. Sid calmed each caller down by telling them he was miles away from the World Trade Center and that there was no worry at all. Although I had let people at Harvard know that I was ok, I didn't think it was necessary to bother my parents or other relatives to let them know my whereabouts, as they did not even know I was in NYC. Surely they would not worry, thinking that I was two hundred miles away in Boston. This was a mistake, as it turned out later, because an extended-family-wide search network had been set up by the time I contacted my folks a couple of days later...

After a while, I got restless and wandered around the business school a bit. TVs were on everywhere, with everyone following the news. When I was in the main lobby, suddenly there was the sound of jet engines in the sky. Everyone stopped what they were doing and looked at the ceiling or out of windows somewhat fearfully. It turned out that it was a fighter jet, coming to secure the airspace, flying low. Eventually, I left the building (Uris Hall) but then realized I could not get back in anymore. By this point, school IDs were being checked at all doors. They were being checked on the gates to the university campus as well, but I had no other business there anyhow so I left the campus.

I made a couple of attempts to call a friend with whom I had had drinks the night before. She worked for Goldman Sachs and did not pick up. I was worried, but I later learned that they were OK. They had all been evacuated and were still in a basement somewhere when I called. The cell phone network was also overloaded so most of my calls probably never went through in the first place.

My scheduled flight later that day was, of course, grounded. At this point, there was no traffic in or out of Manhattan. I needed to find a place to sleep for the following night. Unfortunately, like me, a lot of people were stuck on Manhattan so I could not find anything at a hotel. The Yale Club and Harvard Club were fully booked, too.

Eventually, I got the Harvard travel agency to look for something, and they found me a spot. This must have been positively the last bed left on Manhattan. It was in a run-down building on the Upper West Side, near Columbia University in fact. The reception booth (not desk) had signs demanding payment in full in advance. Luckily, the call from the travel agency had been sufficiently out of the ordinary for them that they merely demanded to get a credit card imprint from me when I came by to secure the room in the early afternoon. The room had a bed with no sheet and a window open to an alleyway. Pigeons from the alleyway had clearly visited the room before I got there. Surprisingly, though, the shared bathroom in the hallway was modern and absolutely spotless!

Later on that day, bridges were reopened, so there would have been many other hotels available. What ended up in zero supply at that point were rental cars. All of those were snapped up.

I walked south all the way to where lower Manhattan was cordoned off with sawhorses. There was some dust, and, of course, police and emergency vehicles, but I do not remember seeing much else out of the ordinary. For example, I never saw any injured people, people covered in dust, or anything like that. The horrible, massive things happening at the WTC site were contained there. What was obvious was Manhattan becoming a ghost town. All stores were closed, including fast food joints. Perhaps the weirdest sight and experience was Broadway, which had so few cars that one could cross the street without even looking.

Regular restaurants were closed as well, but a fair number of bars were open in the afternoon and evening. In fact, they were PACKED. No one wanted to be alone. Every place had a TV on, and the volume was turned to full whenever there was something new being announced. I was lucky enough to find a bar that served food. When I came back to the hotel in the evening, there were various characters lounging on the steps to the building.

On the 12th, I booked a spot on an Amtrak train to take me back to Boston. The first few trains were full so I needed to kill time for most of the day. I walked around New York. At one point, I walked through Central Park and ended up next to 5th Ave, where Army trucks were just arriving, stopping and lining up before heading to lower Manhattan. Around here I also encountered a conman taking advantage of the attacks: a man asking me for money with the story that they had been at the WTC the day before and escaped but left all their belongings in the building.

As I finally got on the train, who else was in the car but Jerry Zaltman, my dissertation advisor! He was on his way back to Boston from somewhere further south- Annapolis, I think. We managed to talk shop a little bit, but clearly it was not at the top of our minds.

That was my experience on 9/11 as well as I can remember it. I will recount two more things that are somewhat related.

One of the companies I studied for my dissertation was an investment bank that had been located in the WTC. I visited them a few weeks later in their new location in midtown Manhattan. I was very luckily that I did not have a meeting with them on the morning of the 11th.

In the months following 9/11, I ended up flying a lot, both domestically and internationally, because I was on the academic job market and was making my fly-outs to different universities. Although security was tight, flying was easier than ever before or after -- the lines were short and the planes were empty."

September 10, 2011

Giving Myself an "A" for Effort (and Bravery)

Back in March, I was gearing up for a new exercise routine to help me take off the rest of the baby weight from my pregnancy with Elisa. I got a good deal on a 5 class exercise pass through City Deal (Groupon in the US), which I planned to use once we got back from our trip to California in April. Unfortunately, after my diagnosis in May and the subsequent surgery and chemotherapy, I didn't quite get around to taking those classes yet...

So now the pass is expiring on September 16, and I figured I'd better attempt to use it so I won't have wasted my money. On Thursday, I went to my first exercise class in months, and it was HORRENDOUS. I found myself among about 20 20-something women, all of whom were fairly petite and fit with push-up exercise tops and perfect hair and makeup. In comparison, I felt gargantuan, old, ugly and fat.

As if just looking physically out of my league wasn't bad enough, I couldn't even keep up with the class. I tried to look beyond that and give myself kudos just for showing up. (After all, I did have chemo just a week before.) However, I was totally uncoordinated and painfully aware of just how out of shape I've gotten over the last few months. The Russian ballerina instructor with the attitude of a Marine Corps drill instructor didn't help matters. I left the class thoroughly deflated and in tears.

On Friday, I decided that, if I ever want to get back in shape (and use up my pass before it expires), I'd have to give it another go. Although I didn't get any younger or more fit overnight, the second class went significantly better. For one thing, there were only 7 women this time. They were all still younger and more fit, but at least a couple of them were equally uncoordinated. The instructor was also very kind and patient with everyone so I managed to keep up and actually get a good workout.

So, after all that, I figure I deserve an "A" for Effort and one for Bravery as well. Hopefully I'm now over the biggest hurdle- just getting back into the game. It's still going to be challenging both to my self-esteem and my body, but, if I can overcome cancer, surely I can conquer this!

September 8, 2011

The "benefits" of chemo

On the days when I'm feeling less than fabulous (or downright crappy), I have to remind myself why I'm doing chemotherapy. Of course, it's one of the best ways to prevent a recurrence of cancer. However, it has other benefits that you might not realize. So I thought I'd elaborate and remind myself at the same time.

1. I don't have to shave my legs or wax my eyebrows.
2. My hair dries really fast.
3. I'm saving a ton of money on shampoo, styling products, haircuts and color.
4. My nails have never looked better! Terrified of the potential side effect of losing my nails, I have been a bit obsessive about taking care of them, which has paid off. I've been using a nail conditioner/protector that works wonders!
5. I'm finally rid of my stubborn plantar wart! I've had it for over 5 years, and nothing that anyone has done to it has diminished it. Until now.

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.

July 24, 2011

Here or there?

A few people have asked me, considering my illness, whether I would rather be in California or Finland right now. It's a tough question to answer because there are pluses and minuses to both sides. Of course, I miss my family in California and wish that they were closer. On the other hand, there is a lot to be said for the socialized healthcare system in Finland.

I never had any serious health problems during my adult life in the US so I never really put the private insurance system to the test. However, I've heard horror stories of people who didn't have any/sufficient insurance to cover a disease like cancer and who went bankrupt or were in dire straits as a result. Having socialized medical care has eliminated that worry for us and has allowed me to focus my energy on getting well.

Everything required for my treatment is covered, with the exception of small, co-payment fees. Here are some examples:
1. I paid 27.40 euros for my mastectomy surgery and another 27.40 for my overnight stay in the hospital!
2. My breast prosthesis, a special prosthetic bra and my hair prosthesis (wig) were all covered.
3. I'm taking a special drug to boost the production of white blood cells to make up for the ones the chemotherapy kills off. I have to take the shot each time I have a chemo treatment, and each shot costs 1300 euros! However, with a special waiver, I only pay THREE euros per shot.
4. In addition, once we've paid 600 euros out of pocket in a year, anything above and beyond that is fully covered.

What's more, the social welfare system in Finland allows fathers to take 3 weeks of leave when they have a baby and another 6 weeks of leave once the mother's maternity leave ends. So Matti has been helping out at home for the last 5 weeks (this week is his sixth). We actually planned for him to take the leave- just so we could spend some time as a family- before I learned of the diagnosis. During this chaotic, stressful time, it's been invaluable to have him at home. I honestly don't know how I would have made it on my own with the girls all these weeks if we had been in the US.

For all the bad press socialized medicine gets in the US, I haven't had any major complaints with the care here. Every step so far has been swift, efficient, and effective. I'm receiving the same state-of-the-art care here that is being practiced in the US and am paying very little for it. (Yes, of course, we pay for it in taxes. However, the amount of taxes paid for what we get back is well worth it!)

So, if I have to be far from my family there, at least I'm being well taken care of here.



July 23, 2011

Beginning again

Forgive me, friends. It's been two years (plus) since my last post. Despite my good intentions to keep a running blog since moving to Finland, regular life just kept getting in the way. I even made a 2011 New Year's resolution to restart the blog this year, and it's taken me over six months to manage it. Better late than never, though, right? Plus, this means that I'll have kept at least one of my resolutions this year!

So, on the third anniversary of our move to Finland, I'm beginning again. Although the original intent of the blog was to share my observations and experiences about being a Jenkki in Helsinki, future posts will probably stray from the theme... Most of you already know that I was diagnosed with breast cancer in May. I had mastectomy surgery and am now undergoing chemotherapy. Needless to say, this experience has pretty much eclipsed everything else right now. So I'll probably end up talking about my health a lot, but I'll try to weave in elements of how my treatment experience here might differ from that in the US or other places.

I may also use the blog as a place to vent. I've been sharing my progress via emails and Facebook updates, but I've tried to keep things relatively positive since a lot of people are reading those. Since likely not so many people will take the time to read this, it might end up being an outlet for me to share my unadulterated feelings. If you get bored or can't take it, feel free to stop reading! However, if you really want to know how I'm doing, you'll now have a spot for answers.

I don't know how often I'll manage to post, but I'll try to do it at least weekly. We'll see how that actually pans out in real life. However, as with most things, getting started is the hardest part. Now that I've done that (again), perhaps it will be easier to keep it going!