Round Two

Well, I guess I survived the second round! My experience this time was a lot more pleasant.
I didn’t have to wait for too long for my blood test or for the doctor to see me, and I had good reviews all around.

My INR is 2.6, so it’s within normal range again. My blood count is a lot better, almost within normal range, but just in case, I’m getting a Neulasta shot tomorrow morning to keep my WBC up. Possible side effects: Aching in the bones and muscles as it stimulates the bone marrow to produce more white blood cells. Like I didn’t have enough pain there already! Oh, well. I have enough Vicodin for an army! Anyone else in pain?

The other good news of course is that the doctor gave us the green light for going to Hawaii. He also gave me an extra prescription for antibiotics, just in case. I need to stay out of the sun and wear a lot of sunscreen. I’ll probably have to carry an extra suitcase full of my medication, one for every symptom. It kinds makes me feel old.

Our plans while we are there are very low key, so I think I’ll be OK. We have a nice room with a view to the ocean, and I can’t wait to see it. I’ve missed the ocean so much! I’m curious to see the Pacific, they say it’s so much more “unfriendly” than what I’m used to.

It's the travel that worries me. We already made arrangements with the airline and we told them that I'm going to need transportation from one place to another. Hopefully that will help. We also got some masks, since I'll be cooped up in small place with a lot of other people. Let alone the swine flu that's been going around! Last time we checked there were no cases confirmed in Hawaii.

I started a new book, so I’m excited to read again tonight. I have so many books I want to read! I’m hoping I can when I’m in Hawaii. In fact, that’s all I want to do. Well, I would like to go see the volcano and maybe drive around to see the rest of the place too, but mostly what I need is time to myself, time with Brian, and days without any kind of responsibilities or plans and schedules. The kids nowadays call it chillax. So that's what I want to do!

I’ll try to get some sleep tonight. Last time the steroid shot kept me up most of the night. I’m going to take my sedative this time, so I can sleep and wake up for my early appointment tomorrow.

It’s been 3 hours and I’m feeling fine so far. I’m a little tired, so I think I’m going to get some rest now. The kids are watching a movie, so it’s the perfect opportunity. I better not miss it! :-)

Later!

A not so Nice and Clean Shave

As if things weren’t bad enough already, today I decided to shave my head!

I had an appointment to get my new wig and have a last fitting. I knew that they were going to ask me if I wanted to do it or not, they had told me so last time, so at least I was prepared. However, up until the very last minute I wasn’t sure. But then when she took my scarf off and I saw the ugly bald spots and my thinning hair here and there, I decided to bite the bullet and go ahead and do it.

I’m not even sure if this is something I would like to share, but I promised to write the truth, so here it goes. This is the first time that I really wished not even Brian was in the room! It was just a bad experience. There are no other words to describe it. I felt so violated!

The girl that took care of me was very sweet and discreet; she even asked me if I wanted her to turn my chair around so that I wouldn’t be able to see her while shaving my head.
I said yes, but then I felt kind of stupid, because I knew that eventually I would have to face it. I kept asking Brian not to look at me and he was kind enough to try to look down at his Blackberry.

When the girl stepped out for a minute to bring my wig, I turned my chair and looked in the mirror. My heart just dropped. It felt as if I were looking at a picture of a prisoner at a Nazi concentration camp. Cancer stinks (Nazis too)! Brian tried to console me by telling me that even like this I still looked beautiful and he came over to hold me and kiss me. Isn’t he a sweetheart? Although I did appreciate the try, I could still see the result myself. It was horrible! There was a little fuzz left, but it looked absolutely ridiculous!

The girl soon returned with my wig and I put it on my head. I felt a little bit better. Less exposed, less vulnerable. It’s a whole new look for me and I must say that I prefer it that way. I know that some people like their wigs to match their old hair, but I wanted something completely different. I wanted to have a look so that if I saw someone I know in the street, they would think I just had a new cool haircut. I was afraid that just having a fake version of my own hair would be too obvious, but that’s just me.

I came home and wanted to go straight to my room. I just needed to take that wig off and scratch my itching scalp like crazy, but I was intercepted by the children. When the boys saw me wearing the wig they had mixed feelings about it. I looked too different they said, but they liked the style. Better than what’s underneath it, I thought. Natalie of course, loved it! That's my girl! I’ll try my best so that they never see me without hair. I'm thinking it would be too traumatic for them, as it was for me. I’m so happy that I ordered all those hats and scarves before hand! I even have a baseball cap with hair! Sweet!

Did I mention that it hurts when you lose your hair? Nobody prepared me for this, but it hurts like heck! Not the scalp, but the hair follicles, as the hair move. I think the shorter hair will help, until they’re gone too of course. The girl said it takes a couple of weeks for the pain to subside. When she washed my head, it hurt so bad, I had to try really hard not to scream. Ouch!

I wonder how it’s going to be tonight. They say that the scalp gets really cold, but fortunately I have a night cap! How sad is that? I'm hoping I'll get some rest, because I feel exhausted.

Last night I slept half of the night in a sleeping bag on the floor, by the fireplace. Natalie’s idea of a fun night! She loves to lay down by the fire! I woke up at about 3:00 am and went to my bed, and then I went back downstairs at around 7:30 am, before she realized I wasn't there the whole night. I knew that if she woke up and I wasn’t there, I’d be in big trouble for ruining it all for her!

Tonight I feel like reading before checking out, which is a good sign for me. Hopefully I’ll be able to relax and have a good night’s rest.

Cheers!

Life goes on

It's 5:30 AM. I woke up a while ago, and I can't get back to sleep. I feel fine, except I have soreness in my throat which I seriously hope it's due to lack of water, rather than a cold of some kind.

It's Easter Sunday in Greece. I talked to mom and dad and Mikie yesterday. I could hear the dynamites exploding in the background. Yes, you read that right, I did not mean to say fireworks. In Kalymnos, the Greek island I was born, custom has it that we celebrate Easter in a most...peculiar way. Men in their 20's, sometimes even older, climb up on the mountains and throw sticks of dynamites up in the air. Needless to say there's been a competition brewing there for decades. The team or mountain as we say, that makes the most noise "wins". If you still don't believe me, search on YouTube "Pasxa Kalymnos 2008" and enjoy the show. :-)

I'm downstairs in the family room. I can hear a lonely bird chirping. I guess someone else is up all by themselves too. I bet his little nest friends are cursing the way he, or she can't keep his or her mouth shut right about now. At least I don't chirp! :-)

I can hear footsteps. It's either Natalie getting out of her bed to come and join us in ours, or Brian realizing I'm not by his side. I'd put my chips on the first one. She really likes to come in our bed early in the morning and spend a couple of hours cuddling with mom and dad.

If you haven't realized by now, I have nothing that's worth your time to read. I'm just up early, and maybe that in itself has some deep significance that I truly fail to understand, other than of course the sad observation that when you feel sick you tend to have restless nights and useless early awakenings. So, that's that.

I sat down to write some e-mails yesterday, and by the time I was done, I felt so stupid repeating myself in every single e-mail that I decided to send a link to this blog to Gramma. She's the only one I felt like sharing this. I don't know how she does it, but she gets me. The fact that she sees her sister's struggle with cancer in mine I guess gives us both the chance to revisit old ghosts that we had chosen to bury in the past, but now feel that need for them to be addressed.

I can't count how many times since this ordeal of mine has started, I've had the picture of my poor uncle Michael come to my head. I remember I was only 13-14 when I first found out that he had cancer. He left with my aunt to Athens in order to find some "good" doctors there, leaving my 2 cousins to be looked after by my Grandma who came to stay with them. He was diagnosed with lung cancer, that later metastasized to his brain, and spent months in a hospital there.

My brother, who was in his first year in college, used to visit him a lot. One of the times Antonis came back he brought home a small bag with a lock of my uncle's hair that he picked off the ground when he chose to shave his head during his chemo. My mom still has it.

I still have his picture in my head, riding his bike to work every morning, then coming back in the afternoon to eat in a hurry and then go out in his yard and work for hours at a time. I almost always remember him on his knees sweating to plant things, strawberries, carrots, pretty flowers and trees, or paving the walk way to the house, carrying rocks, and painting.

The next time I saw my uncle, he was a dying man. They brought him home in a stretcher, he was half his size, with a gauntly pale, yellow face, and no hair. The laid him on Kaki's bed, and I don't think I ever saw him standing again. He used to slip in and out of consciousness, moaning in his sleep. My aunt used to go in and out of the room bringing him pills and a cup of water, and rubbing her hands raw with alcohol to keep off the germs.

I remember the few times he would open his eyes and see me there he would start telling stories of funny things I used to do as a kid. How I used to say "shhh" with my back teeth instead of "ssss" with my front, how I used to beg him to let me try the carrots he had planted, always funny stories. It felt weird to be remembered that way. Up until then, those would be the kind of stories a teenager like me dreaded. This was the first time I heard those stories and felt proud that they were important enough for my dying uncle to remember.

One day I came home from school early. I had found a puppy in the street outside our schoolyard and I was excited to take it home and beg for my mother to let me keep it. When I walked in the house there was no one there. I went outside to our porch and looked at my aunt's house (our houses are right next to each other, since my Grandpa who built both houses wanted to have his 2 daughters live close) and saw a neighbor getting water from my uncle's well. She looked at me and said "your uncle..." and then gestured with her hands "it's over".

I was shocked! Here I was with this cute little puppy in my hands, all excited to show everybody yet another pet I brought home, or rather saved from the streets, as I always liked to say to my tired mom in hopes she'd let me keep it. I didn't know what to do. I had even brought a friend along to ease the process of persuasion. I could always count on the fact that my parents would go easy on me if I had someone outside the family there with me.

I put the puppy in the bathroom and walked into my aunt's house. I saw my aunt dressed in black. She looked at me sadly and said "Paei o theios", " your uncle's gone". I hugged and kissed her. I looked and saw his body laid in a casket, trimmed with white flowers, right there in their living room. Men and women with sad faces, dressed in black, sitting all around, and my parents among them. My dad stood up and hugged my uncle's body and cried. It's the only time I've seen my father cry. Even my mom was shocked. I don't think she had ever seen him cry either. She came and talked to me.

I felt really lost. I had sneaked out of school during recess. What do I do? "Go back to get my stuff," I guessed. Then it dawned on me. Petros, my cousin was still at school. I had found a purpose, a way to be helpful! I turned to my mom and said I'll go back to school and tell Petro. I'll bring him back home.

I left running and didn't stop until I saw the school's steps. I walked in and timid as I was back then, I immediately felt this had been a really bad idea. Now I actually had to talk to the Principal and ask him to let me go find my cousin in his classroom and break to him the news that his dad had died. I think God felt sorry for everyone involved, so when I finally mustered the courage to walk into the Principal's office, he informed me that his other uncle, uncle Michael's brother, had already come by and picked him up.

I went back to my classroom and told the teacher I had to leave, so I packed my stuff and went back home. Petros was already there when I arrived. After talking to him for a few minutes he went in his bedroom, broke down and started crying. I stood there not knowing what to do. I don't think I had ever hugged him before; I was usually his favorite past time, and not in a good way. One time he and my brother had tied me up on a tree terrorizing me for several minutes that felt like hours to me, threatening me that they would let spiders loose on me if I didn't quit following them around and ruining their playtime! But I was old enough to understand that this was all in the past. I hugged him and lied to him that it would be all right.

We hanged out all day and all night. I remember it was a windy night, but not cold at all. We were out wondering around the front yard, amazed at our newly found freedom to be up so late, not in our beds and not under the constant adult supervision we were used to. They even let us drink coffee! We mostly joked and laughed, but we were also a little spooked by the sound of the howling wind. It was awesome! One of the best times I ever had with my cousin. Since then of course we've grown pretty close. I even was his "koumbara" at his wedding, in other words I was an official witness to his marriage to his wife, which in Greece at least is as important as being a godmother to his children.

The next day was the funeral. We dressed in our Sunday clothes and got ready to go. My cousin Kaki who was up all night sitting by her mom and had nothing to eat all day, just collapsed. I remember walking in the church and only a few minutes after that she leaned on my shoulder and whispered in my ear "I need to get out of here. I don't feel well." I almost carried her out and then supported her all the way back home. She felt clammy and she was shaking. I was a little bummed because I really wanted to be at the funeral, but I didn't regret it. She was in a really poor shape.

I don't remember much after that. The first few weeks I remember spending a lot of time at my aunt's house, thinking they could all use some company and support, but after that I guess life just went on as usual. My family moved to Athens the next year. Later on both of my cousins got married, Petros has 3 kids now, and he took over my uncle's store and opened his own right next to it. Kaki still lives in the house and sleeps with her husband in the same, but newly furnished, room that her father died. My aunt still wears black and lives in a little guesthouse they built for her right behind the main house. In the exact spot where my uncle used to have his tool shed. The one that Petros burned down trying to figure out how to light matches, but that's a whole different story.

Life does go on. Even after death. Only I didn't get to keep the puppy.

Round One - Us and Them

I had my first treatment today. It was raining and it was pretty depressing.
I felt uneasy and worried.

When I arrived at the clinic of course I had to fill out all the paperwork first. I felt so uncomfortable in there. I really didn't get good vibes from the place.

After all the paper work was done, a nurse came and took me to a room to take my vitals and ask me some questions. Then we went back to the waiting room to get Brian and walked to a different room where my oncologist was going to come and talk to me.

Before the nurse left she put a ...paper (what the heck, PAPER??) robe/shirt on the chair. I assumed of course that I was supposed to wear it. It felt so uncomfortable, it was short and didn't have sleeves, like a short poncho made of paper. I felt so...degraded. Why do they treat sick people this way? Like having cancer and being poked and pricked and probed doesn't already take enough of our dignity away? I was obvious a little sad, and Brian who saw me like this got really upset. He worries about me a lot.

Finally the doctor came in. As soon as he saw me I could tell that he felt apologetic too. "You really didn't need to take your clothes off and wear that!" Really? Then why do you even have those things in here? For those who feel like wearing them?

Anyway, he told me not to worry, everything will be OK blah, blah, and he talked about my cancer and the way he wants to treat it. Brian of course had a ton of questions again. I really don't know how he comes up with all that stuff! Of course it's extremely helpful, because I'm still in such a daze over this whole thing. There are still moments that I just don't feel like talking about it! I want them to do whatever needs to be done, no questions asked. I know it's not the right approach, but that's how I feel, so having Brian with me is really a blessing. He's the one that keeps me sane, and of course...completely informed!

I was a little surprised when the Dr. ,who saw my reaction after having to listen to all the details and statistics, came close, held my hand and told me: "You're like my wife when she had breast cancer. She didn't want to hear or talk about it, she just wanted it out of her." Bingo!

Well after all the talking, he sent a nurse to come and talk to me (some more) about all the side effects that I would probably experience after the treatment. She explained step by step what they were going to do to me, she gave me 2 folders full of information and a cute tote bag to put everything in. She was very nice and friendly. She was also very thorough, so Brian didn't really have a lot to ask this time! ;-) When she was done she took me to the 3rd floor to start the treatment.

When they called me and lead me to the room, my heart just dropped.
Here I was in long shaped room packed with la-z-boy chairs, about 25 chairs total, each with an IV stand on the side, and tons of really old and middle age suffering people (many of them African Americans, since this is their downtown office) sitting miserably in them, with IVs stuck in their arms or chests. Granted they had la-z-boyz, although they were the really cheap kind, but nobody seemed to be enjoying this "luxurious comfort".

My first thought was that it looked like a very old hair salon that a lot of sick people liked to frequent in order to get their haircuts. Then I noticed 2 bald ladies, one wearing a wig and another one with a scarf, so that perception seemed pretty lame on my part.

I felt restless. Is this how I'm going to be in a few weeks? I couldn't help feeling that I really did not belong in that group. I could tell that many of the old folks were staring at me, thinking that I was too young to be there. Some would just nod their heads to let me know they understood this would be hard on me, just like it was hard on them. I could even hear whispers, but now I think that it could have been all in my head. I heard a rush of blood going to my head blurring my vision and I felt disoriented for minute or two.

The nurse that took me in probably noticed the horror in my face too.
She said: "Eeee, let's take you over to that far corner, it's more quiet and your husband can have a seat right next to you too." Thank goodness!

I ended up sitting at the very end of the room and although it was a lot better, I still could not believe what my eyes were seeing! "How could this be?"Brian said. I could tell that he felt so bad! First the paper poncho, now this. He kept apologizing to me and saying how sorry he was. He kept saying "I'm supposed to take care of you, and this is unacceptable! We'll find a different place."

It didn't take too long for both of us to realize what was wrong in this picture. Since this was their downtown office, it must "serve" patients that can only afford the less favorable health insurances, like Medicare etc.

I felt so sorry for those people, and guilty at the same time. I didn't like being treated this way, but at least I have the option to get up and say: "Are you kidding me? You call this "care"? (ironically that's also the name of the clinic!) I'll go somewhere else, and my insurance will still cover everything."

I was ashamed to realize that all those old people and working class adults, who looked so frail and were scared as much as I was, if not more, really had no other choice but to take this "care" and deal with it. No other option.
I turned to Brian and said': "You know, I only have 5 more treatments. It's not that bad. I just want to do it and be done. I really don't care what this place looks like." I think he felt a little better. I know I did.

Later though, when I went to use the restroom, we saw that down another hallway there were... "private rooms". Women with gold fingers on their fat fingers, right by their husbands in their expensive suits, peacefully reading their newspaper or talking on their Blackberries, while the IV dripped in their arms.

At first I was relieved. That's more like it! That's what I'm used to! Let's do this next time! And then it hit me again. Us and them...
Like cancer will treat us better than it treats them, because we get to be in a private room while they push poison in our veins. Malakies (take out your Greek dictionaries.)

It was a surreal experience, to say the least. It certainly was an eye opener and it made me feel quite strange.

Anyway I went back and started the IV again. A young nurse kept coming to take my vitals every 15-30 minutes. She said it's because it was my first time and they were worried about a possible allergic reaction to the medication.

Well, it did feel like there was something nasty flowing in my veins (yeah, I wonder why), but now, several hours later, I still don't have any nausea or dizziness yet, just a really bad heartburn.

They did give me 2 different medications through my IV for nausea etc. before the chemo, so I should be OK for today. If it gets worse tomorrow, my oncologist has already prescribed the same kind of medicine in pills. I'll have to take those for the next 48 hours just in case.

I feel rather tired of course and by blood pressure that's usually between 80-100, is up to 120-130 again. I know it's still withing normal range, but it's higher than my normal. My diastolic though is fine. My heart rate also went up again after the treatment. It was 74 yesterday, but it was 102 this evening.

They did checked my INR (how much time it takes for my blood to clot) which, to my dismay, had climbed up to... 5.8!! Yikes!
It should normally be between 2-3, so of course now they're afraid it might cause bleeding! They told me not to take the Coumadin (the blood thinner I've been taking since I got out of the hospital) for the next couple of days, then take only half a pill (2.5 mg) on Monday, then switch back to 5mg, then 2.5mg again and alternate the dose until Friday when they'll recheck it.

I'm supposed to call them if my fever goes over 100.5 even if it's the middle of the night. I just checked and I have 100.4, I feel chills and I'm all sweaty at the same time. I'll pretend I won't check it again until tomorrow, because I'll be asleep. ;-)

I know that if I call they'll tell me to go to the ER, and I also know exactly how it's going to be there. I'll have to wait 3-4 hours for someone to even glance my way! So, thanks but no thanks, I can sleep in my bed, get some rest, and go tomorrow, if I need to (knock, knock). I'm hoping not.

And this brings us to my other problem. How is it possible for me to be dead tired, but still can't sleep! My doctor gave me Ativan (a sedative to calm me down If I'm too anxious to sleep), but I really don't want to take it. I'm sick and tired of all the medication I have to take, but I feel I still need to give it a try. So, I'll hurry up and wrap up, read the new book I downloaded on my Kindle, a very interesting book called "Beyond Belief: The Secret Gospel of Thomas"

Hopefully I won't be too sick to write tomorrow. The warned me that the next 2 days will be the worst! This will be quite the Happy Easter!

Save me Easter Bunny!

The nasty medicine that scares hair away and other horror stories...

Brian has been calling around other hospitals, talking to breast specialists and looking for a second opinion all morning. It seems we're on the right path, so I'll start my chemo tomorrow. We'll probably see other specialists before it's time for my surgery.

I'm debating whether I should get a haircut or not. Many people who have cancer say it's easier to deal with the hair loss, if your hair is already short. I don't know. I think I want to keep my hair and bid them farewell as they go, LOL!!

Today I was explaining to Natalie that I will start taking this really nasty medicine and that my hair will not like it at all! So all the hair, all over my body, will want to escape. For as long as I take the medicine, my hair will not want to have anything to do with me and they'll stay away. When I'm done taking my medicine, they'll come back again. She thought it was pretty funny(I think it was the sound effects I made like "heeelp, I'm outta here", that did it.) Then the 2 of us started looking for hats and scarves on the Internet. She was very happy to help me choose the right ones. She's so cute!

I hope the kids won't worry too much when they see me being sick after each treatment. I try to talk about it with them, and answer all their questions. I try to make it sound that it's not such a big deal. From their reaction so far I think I've done a good job and they're going to be OK. They know what to expect, so I'm hoping it's not going to be such a big shock to them. I joke a lot about it, so David and Darian following my lead I guess, offered to give me an afro wig they bought for Halloween! I guess everybody's spirits are still high! :-)

Well, that's all for now. I'll keep you posted as more things come up.