what thoughts rattle around in your brain when you're a mom of a toddler and a breast cancer patient?

Tuesday, November 30, 2004

Reality TV: I just don't get it

What's the lure of reality tv? Seriously, there is nothing realistic about the storylines. People don't get stranded on islands and they don't switch mothers or have to eat bugs for food...at least not very often. The people on these shows know they're being taped, so it's not "real" in that way. From what I hear, the people featured are not the kind of people I'd be interested in getting to know more about and I doubt I would want to be more like any of them.

Nevertheless, most of the friends I have watch at least one or two of these shows. Last night, Dan and I watched "Trading Spouses" because a guy he works with (and the guy's wife) were on this show. I am embarassed for them! When the show was over, Dan went online to the Fox TV chat room and read what people were saying about the people he knew, The Gates family. There were 27,000 messages, mostly that Barbara Gates is a rotten, obnoxious woman and a terrible mom, both to her own children and to the child in her "substitute family." One person claiming to be their neighbor actually posted the Gates home address so people could send them hate mail.

Truthfully, I'm not a fan of Barbara Gates. She is a self important, self-aggrandizing, egotistical hypocrit and she makes a big deal about being a vegan (that's a vegetarian) and animal rights activist. Dan and I invited Barb and Bill to our wedding and as a nice gesture, we ordered them vegan meals for our wedding lunch. Not even one year later, Dan is chatting with Barb and she says she doesn't even remember going to our wedding! My other recollection of Barb is from the company Christmas party where she yelled at some poor banquet server because there was cream for the coffee but no non-dairy creamer and since she is vegan, she would not use cream. Fine...don't use cream (or, just bring your own non-dairy creamer if it's that important) but for pete's sake, don't harass the waiter. To me, this is a woman who just doesn't have enough going on to see what is and is not important in this life.

I'm not saying I'm the only one on earth who knows what's important now, just because I've been diagnosed with cancer. It was an eye opener certainly but I know my eyes were open pretty good before the diagnosis too. And I know lots of people who "get it" who are and always have been healthy.

I think I was going someplace with all this, but where? Let's recap briefly: I don't like Barbara Gates. I don't mind animal activists or vegans but it should not be the defining factor of a person. I don't understand why America loves reality TV so much. I think a lot of people miss the point of being alive. I don't think I have all the answers but at least I'm looking.

Saturday, November 27, 2004

This Time, Last Year

I was just staring at the keyboard thinking about where I was this time last year. I was pregnant and my baby was going to be born in about a month. I was spending a lot of time reading about giving birth and I was pretty scared about how it was going to go. I had hired a doula to share the birth experience with Dan and I and I felt like she was going to make all the difference.

Here it is only one year later. I have what barely amounts to a crew cut as my hairstyle, one breast, three scars from surgeries and I bet I weigh about 45 lbs less. When I read that back, it sounds like I'm sad about the differences but really, I'm not. Mostly I'm just glad to be here.

A change of perspective is clearly the reason. I used to sort of resent having a birthday every year. Now I think I'm going to be happy to be around as long as possible. I'm not worried about aging and getting older...the opposite actually...I'm worried about not getting older.

It's my 20 year high school reunion this weekend. Obviously I didn't go, the timing is just all wrong. And anyway, I hated high school, I was so unhappy then. So much bad stuff going on at home, I was permanently depressed and bitterly sarcastic. I get the feeling that alot of people spent high school trying to fit in but as I recall, I spent a lot of time distancing myself from all my former pals. When I was in the early grades, I always had so many friends. By the time high school came around, I just wanted to disappear.

That feeling of depression pushed right on through until at least my mid-twenties. All I can say is thank god for therapy and SSRIs.

Tuesday, November 23, 2004

Good and Bad Energy: Tales of the Time Burglar

Next time you meet someone new, pay attention to how you feel when you're done talking to this person. Do you feel energized and still interested in making the most of your day? Or do you feel like all the energy has been sucked out of you and now it's time for a nap? I often wonder how a simple conversation can evoke such a strong reaction but it happens to me all the time.

Sometimes I just connect with someone and when that happens, it's memorable. Memorable makes it sound like it doesn't happen often...actually I find it remarkable how often it does happen. I'd say that since being diagnosed with cancer, it happens more often than ever. Maybe this is because right now, I tend to meet more people who have something (cancer) in common with me. I'm in places where those people are: the infusion room, a doctor's office, or a place where diagnostic tests are given. Or maybe it's somewhere slightly more pleasant: a place to buy a wig or get a special clothing item that works with a prosthesis.

I've found that most cancer patients I'm chatting with are incredibly candid about their feelings. They'll do this without hardly even knowing me and I return the trust by doing the same. How often do normal, healthy people do this with eachother? Allow me to present some possiblities for this phenomenon: my first thought is that when a person is presented with a life-threatening illness, perhaps one of the first casualties is the kind of conversation some people call "chit-chat." Personally speaking, I've realized that it's important to say what you think when you're thinking about it. This is not to say that there's no longer any room for talking about movies, fashion and music. It's just that if there's something more important that needs to be said, it gets said first.

Now let's talk a little bit about the kind of person I'll call a Time Burglar. The Time Burglar is the person who needs constant attention and who thinks the world revolves thusly. The Time Burglar makes you think about every word you say before you say it because s/he may take it the wrong way and will then get angry and cause you much regret that you weren't more careful when you tried to express yourself. This person can talk for a really long time and never say much. In the movie Pulp Fiction, Uma Therman's character asks John Travolta's character "Do you listen or do you just wait to talk?"

Sometimes it's not a person but an activity that drains away energy and when that happens, it's called a Time Suck. Good examples of the Time Suck: watching sports on tv or playing video games. Not to say that Time Suck activities are not fun -- they can be, but most times the brain sort of checks out during these types of things. (I'm sure I'll piss off alot of people by writing that.) And there's a good reason to call it a Time Suck because the time just floats away and the people involved are hardly aware of it.

I'm getting off track here. My point is, I love the feeling of connecting with someone and getting that high from the energy created. I love a conversation where I come away thinking about what was said and feeling the emotion that was behind the words. These are gifts we give to eachother, as fellow human beings.

Monday, November 22, 2004

Changing the Locks

When your body has betrayed you, how do you ever feel safe again? I don't have the answer to that but I'm thinking about it all the time now. Betrayal of the body is not like being betrayed by other elements. If a person betrays you, you can remove that person from your life or that person can tell you s/he is sorry and you can try again. There's even an expression for when a person betrays your trust: Fooled me once - -shame on you, fooled me twice -- shame on me.

My body has always been so trustworthy until this cancer thing. It has gotten me through three half marathons and one full marathon. Through weight lifting, cycling, spinning, the eliptical trainer, walking and occasionally, being lazy. Through dieting, both carefully and carelessly. Through pregnancy and childbirth. I was the person who never got sick when everyone else was catching a cold or the flu or whatever was going around. I know my body will get me through cancer but why did it get cancer in the first place?

My imagination spins a million possible reasons about why I got cancer. From my mother's smoking during my entire time growing up? From living too close to busy roads? From microwaving stuff in plastic and paper? From taking Clomid to try to get pregnant? From taking birth control pills for so many years?

The logical part of me says that if I don't know why I got cancer, then how can I avoid getting it again? My brain loves logic, it makes the world go around. I'm not a computer programmer but oftentimes programmers think of logic in an "if...then" statement. IF something happens, THEN do this. IF I don't know why I got cancer, THEN how do I keep it away from me for good this time?

Last night I had a dream that I was changing the locks on everything. The car, the house, the office door, the locker I sometimes use at the YMCA. I mean everything. Today the logical part of me wants to know what that means? Does it mean, If I change all the locks, can I keep cancer out of my life for good?

Obviously, the problem with not knowing why I got cancer means that I have nothing I can make changes to in order to prevent cancer's return. I don't smoke, I exercise, I eat pretty well, I'm not overweight. I'm not in the high risk group for cancer and yet I have it!

I have read in a few different books that some researchers think cancer is caused by stress. Possibily. Stress causes the immune system to work less efficiently. A less efficient immune system might not be able to crush those rogue cells that are reproducing out of control the way a cancer cell will do. But seriously, who does not have stress in her life somewhere? If high stress caused cancer wouldn't a lot of other high profile people also have it? and yet they don't.

Stress is the one thing I know I had lots of, but did it really cause my cancer? Just in case it did, I'm taking steps to reduce stress in my life. I will take Yoga. I will take time to breathe. I will take things less seriously. I will envision a healing white light surrounding my body and I will advise it to be on the lookout for cancer cells. I will try to forgive the people in my life who have not been good to me. I will try to accept people for who they are.

Friday, November 19, 2004

The 4am Philosopher

It's been awhile since I had a full night of sleep. To be more specific, let's define what I mean by that. 8 hours of sleep in a row, uninterrupted. I'm trying to think when that was, those blissful 8 hours of snooze time...somewhere in early pregnancy perhaps? At some point in my pregnancy I woke up all the time to pee or to change position or because my hip bones hurt.

Then of course, the baby was born and no one needs me to tell them that a newborn does not allow for an 8 hour snooze for her parents.

After only a few months of newborn baby sleepless nights came the cancer diagnosis. Lots of sleep lost there. Then stress from pending tests, treatments, surgery, etc. plus a baby that wakes up sometime between midnight and 4am to be taken to her parents' warm and lovely bed. Jennifer is spending more hours in her crib these days but to be honest, I don't mind a bit that she wants to come in with us. There is something so comforting about having her there cuddled up, sucking her thumb and making her little baby sounds. It's soothing for me to watch her sweet sleeping face or touch her soft little hands. She is such a gift.

I've read all kinds of books about insomnia. I've spoken to my therapist and a psychiatrist. I've taken sleep medication. Nothing really works. I think the thing that will work is being done with all treatment and all surgery (even the cosmetic stuff) so that I can start the next chapter of my life. And that's what I really think about when I wake up...what will I do with the time I have here on earth?

No one really knows how long she has here. Since having cancer, I have realized that. Before that I'd have to say I never really thought about it, and just assumed I'd live to be an old woman. Now I know differently -- I might live to be an old woman and that would be fabulous -- and I might not. It can all be taken away anytime by a million different things. Not just cancer or illness. Car accidents, deadly terrorist attacks, other kinds of freak accidents. I just saw on the news today that a person was critically injured because someone threw a frozen turkey out a car window and accidently hit this person with it. How do you plan for that? Now I know that you can't plan for any of it and you just need to make the time count every day.

I am not the person I was before the cancer diagnosis and there is no going back to her. I don't think of this as a loss, although to some extent it is a loss of innocence and that is always sad. I'm searching for what it is that will be meaningful to me and then I will pursue it relentlessly until I'm satisfied with the results. I don't mean the obvious stuff like spending time with my family and making sure to tell the important people in my life that I love them. I'm talking about finding the reason that I'm here on earth. Making some sort of small difference in how things happen here. I just don't know what that thing is yet. But believe me, I'll figure it out and give it everything I've got.

Thursday, November 18, 2004

Infusion: What's it like?

As I mentioned, infusion is another name for chemo. I get a little giggle out of that because recently I noticed that Starbucks calls their tea concoctions an infusion too.

Chemo is usually given as an IV infusion and you can get it through a vein or through something called a port. A port is a surgically implanted device that is sort of like a vein hotline and is threaded through a more major vein like the superior vena cava which goes directly into your heart. I chose to have a port because using your veins for these really harsh drugs can mean the end of your veins as you know them. As it is, my veins roll and close so that would make chemo even less fun than it already is. And with my first chemo regimen, if one of the medicines leaked out, it could damage the surrounding tissue. My port is directly under the skin on my left arm and on the right (body) side of my middle bicep.

The first thing I wanted to know when I sat down in the infusion chair was how long is this gonna take? It depends on what drugs are being given. The ones I've had always take a long time, 3 hours or more. Some people are in and out of there for theirs in just a few minutes.

I had imagined that as soon as they plugged me in to the IV, I would start puking. Not the case at all. In fact, for the first regimen of chemo I got (Taxotere, Adriamycin and Cytoxan), I never threw up, not once. For the regimen I'm getting now (Cisplatin and Gemzar), after the first infusion I tossed my cookies miserably starting at about 48 hours after the treatment. I had the second part of that infusion yesterday (a week later) but was given some new medicine to try to control the puking. I think it goes without saying that I would like to avoid puking during after any more of these infusions.

After my very first appointment with the oncologist, he and the head chemo nurse walked me through the infusion room so I could see what it was like. My reaction: I burst into tears. It was reality and then some. Not that the people looked miserable or anything. Actually many cancer patients are quite upbeat and chatty, and they are sitting there with friends or family, reading, watching tv, knitting etc. They don't all look sick either. Most of them did look alot older than me although occasionally I do see someone who looks about my age.

I have never seen any young kids in there getting treatment. I think the kids who get chemo get it at Children's Hospital but I really don't know. When I'm all done with my own treatment, I may volunteer to visit the kid's chemo room, wherever it is. I bet there are some really amazing little kids sitting there.

Ok, so here's what it's like to get an infusion: I showed up at the appointed time to check in. Starting with this chemo, I was given a pill to take one hour before chemo started to try to help prevent my delayed nausea/vomiting. Then a nurse took my gigantic medical file folder and looked to see what I needed that day.

First, the nurse drew blood for a CBC (complete blood count). This is to be sure none of the my counts are too low and if the counts are too low, treatment may be postponed until the doctors can get it back to a comfortable level. They do that with injections to boost white and red cell counts. Those shots hurt SO much. They leave a bruise that lasts a couple of weeks, too. Sometimes a patient gets those shots prophylactically on a weekly basis. That's how they did it for my first kind of chemo.

Once the CBC is out of the way and if I "passed" then my infusion starts. By the way, this time I didn't officially "pass" because my platelet count and white count was pretty low after only the first treatment. My doctor decided to only give me half of my dose of chemo drugs, which he said is common for patients on this regimen.

Since I have a port, the nurse accessed it with a special kind of needle and then flushed it out with something, heparin maybe? Then they started Pre-Meds. Pre-Meds are anti-nausea medicine, and some other stuff: a diurectic (to flush it all through) and some minerals (magnesium) since the chemo I get tends to deplete the body of that. Once the Pre-meds are done, chemo gets dripped through the IV, one bag at a time. When my chemo drugs were done, I also got extra IV fluid to hydrate me since my chemo drugs can be hard on the kidneys.

For these last two infusions, I have been in the infusion room from 1:30 - 5:30 or 6:00 pm. I have to go back tonight for an injection of some medicine called Neulasta, which boosts white blood cells. It usually causes a nasty backache the day after and for a few days following because as an adult, your body only makes white blood cells in the marrow of your long bones and the ones I tend to feel that in are the long bones in my lower back.

Chemo with Angela as my companion (I call her my Chemo Sabe) has been pleasant. This time I brought us some snacks: cheese and crackers, green apple slices and chocolate chip cookies. She brought us the last few episodes of the final season of Sex and the City. All in all, except for having an IV stuck in my arm, it was actually fun. Go figure.

Wednesday, November 17, 2004

Free Radicals

Today I'm going in for part 2 of my first cycle of chemo. Funny thing about chemo, the goal is to create free radicals which will kill cells. Healthy cells and cancer cells. The oncologist is trying for cell death, plain and simple. Programmed cell death has a name, I think its apoptosis. Healthy cells are programmed to die within a normal period of time for whatever kind of cell it is. A cancer cell loses its programming somehow and just keeps going and making more of itself. Not good. This is how tumors form. (I've oversimplified it but ok, work with me).

When you listen to commercials for vitamins, especially antioxidants, the vitamins are promoted to prevent free radicals from forming. Therefore, only low doses of vitamins are recommended during chemo because as I said, chemo is meant to produce free radicals. Sounds weird, right?

It's hard to describe what it feels like to go to a chemo treatment. They call it an infusion. Doesn't that sound healthy and new age? Anyway, I dread going and yet I look forward to it because it means one more is out of the way. I'm getting the #1 emetogenic chemo drug, cisplatin, along with another drug called Gemzar. Emetogenic means it makes you toss your cookies or feel really nauseated or both.

Last Wednesday November 10th was my first treatment with these new drugs. I got really sick on Friday which is considered a delayed reaction. Most people get sick between 4-16 hours after a treatment, not 48 hours after. Its less common but it happens, and it's also harder to treat. My oncologist is suggesting a new drug called Emend that might help. It's $250 for three pills. I was speechless when I heard that. I don't know what people do who don't have heath insurance. I guess they bounce alot of checks. I read that lower income women have a higher mortality rate when it comes to breast cancer. White women have the highest survival rate. That works ok for me because I'm white but I can't imagine how I'd feel as a lower income woman who was a minority too. No one needs to feel the odds stacked against her any more than they already are when you hear the words cancer come out of your doctor's mouth.

I saw an advertisement at the oncology office for a drug and the caption was "The only thing worse than hearing you have cancer is hearing it twice." This is why I'm getting more chemo now, while my disease is considered to be curable. Cure me! I miss my days of good health and strong physical condition.

My friend Angela is going with me again for today's chemo. When she went (she recently finished treatment herself), she said she tried to make each one an event. That made it sound good so that's what we're doing. We're going to dress comfy, I'm bringing us some snacks and she is bringing a video of Sex and The City for us to watch since my onco office has tvs and vcrs at each chair.

In Yoga, at the end of the session they say Namaste. It means I bow to the light in you. (or something like that). So to my Good Cells, Namaste and rest in peace, I'm sorry you have to die today along with the enemy. Cancer cells, go straight to hell and don't come back, you are intruders and not wanted in my body. I know you're sorry for turning on me but I can't forgive you because you have caused me so much misery.


Tuesday, November 16, 2004

It's the little things that mean the most

Since being diagnosed with cancer, I've really seen my friends and family do some incredible things for me. Some small, some not so small. I want to keep track of this because it's been so important to me to know that people are thinking about me and doing what they can do to help me and my family get through this. It's not in any sort of order and I may not get it all up there in one fell swoop but here it is.

Dan (my husband): I don't even know where to start. He still thinks I'm sexy, even when I'm bald with one boob. He takes over with the baby and never complains. He keeps the house clean and does tons of laundry. He walks our dog and remembers to feed the cats. He went to each and every chemo with me during my TAC treatment. Put my wig on and looks like Spicoli from Fast Times at Ridgemont High and makes me laugh so hard I cried.

Susan: Picked up the baby on the days I had chemo. Went out of her way to get a baby seat for her car so she could do it. Always calls to see how I'm doing. Came over and helped me style my wigs since I'm not great at stuff like that.

Maggie: She sent me $50 worth of Cold Stone gift cards when I told her my tastebuds were ruined by chemo and ice cream was one of the only foods that tasted ok.

Brenda: My breast buddy, a cancer survivor. Amazing moral and emotional support. I feel like I've known her my whole life, not just for the last 10 months or so. I can talk to her about anything and she just understands.

Angela: See all that stuff up there about Brenda? Same goes for Angela only I haven't known her for as long. These two women have made it bearable to go through treatment and keep a smile on my face.

Vikki (my sister): She sent me a few thousand dollars to put in my savings account to pay for whatever I couldn't pay for on my own. I didn't ask, she just sent it and says she doesn't need it back. She doesn't remind me about it or ask how I'm using it. Also, she has flown from NY to CA a number of times since my dx to help me through emotionally rough times. As a surprise, she sent me a cute pair of shoes like some she has that I commented favorably on even though I didn't ask.

Tina: She cooked for my family and filled our freezer with tasty dinners. She came over when I was sick and had the baby with me even though it was during the middle of her work day. She calls often to see how I'm doing. Has volunteered to go to a chemo with me.

Dad and JoAnne: They call often to see how things are going. They came out for 17 days to help the family after my surgery since I couldn't pick up the baby. They paid for groceries and gas for the car. JoAnne is always there for an IM. My dad has been through chemo and knows how crappy it can be.

Mark: He calls all the time to see how I'm doing. He and his wife watched the baby so my husband and I could have a quiet dinner alone. He makes me laugh about stuff that didn't seem funny at first but does now. He can make anything funny, and knows when its important to get a laugh out of me.

Fretz: Tried to get my employer to allow other employees to donate sick time. Brought me cookies. Calls often to see how I'm doing. Makes me laugh. Didn't blink the first time he saw me with a bandana on my head and no wig. Has volunteered to go to a chemo with me.

Aunt Angie: We have been out of touch for years and had a misunderstanding as the cause. She wrote to me when she found out I had cancer and now we chat through email and post. She sends me a check when she can and always tells me to spend it on myself, not the kids or the bills.

Tom, my boss: Has been wonderfully flexible with my schedule as I went through all the diagnostic tests and then chemo past and present. Does not over manage me and knows I will get my work done and not disappoint him.

Jill: She went with me to see doctors during my diagnosis and workup. She spent alot of time talking to me about cancer since both her parents and sister have been through treatment.

Helen: Where do I start? She is a breast cancer survivor I know through work. She is spiritually vibrant and has great energy. She is supportive and always knows what to say when I need a calming voice. She is the kind of person I aspire to be more like.

Bobbi: A friend of my stepmom's and now a friend of mine. A survivor of late stage ovarian cancer. Another good resource to talk to about treatment. Has a helpful son who is a radiation oncologist. Made me a polartek fleece blanket that I wrap myself in every night like little kids do with their favorite blankie. Sends me strength each night when she looks at the sky over her house in FL.

Lindsey: Sends cards and emails me. Sends little care packages periodically. Didn't bat an eye when she first saw me with no hair and a bandana on my head. Has a wonderful sense of style that I would copy in a heartbeat if only she would give me about 4" of her height (she is almost 6').

Kelly: After my surgery, she sent a giant box of gourmet food to our house so that we didn't have to worry about dinner for about a week.

There are plenty more people who have been terrific. I'm not done yet.

Monday, November 15, 2004

My Little Ray of Sunshine

It is simply not possible for me to love another creature more than I love this baby. Just when I was starting to think Dan and I weren't going to get pregnant, there she was. See...surprises. You never know when you'll get one. I will do anything I have to do to try to get more time with my family on this earth and that means sucking it up and getting all the treatment the doctors recommend to try to get a "cure" for my breast cancer while it's still in the "curable" stage, that is, not spread to distant organs in my body.
Posted by Hello

How did I get here?

My daughter Jennifer was born on December 24, 2003, at 2:43 pm. She was born c-section after about 12 hours of labor. She got to +1 and could descend no further. I forget the name of the "presentation" of her head, maybe it was occipital. It meant the widest part of her head was trying to come down thru my pelvic bones and it just wasn't happening. When my doctor finally told me that she had to take the baby c-section, I cried. It was the thing I had been afraid of most when it came to child birth. And there it was happening to me and there was no changing that. And you know what? It wasn't that bad and my baby is healthy and beautiful. I have a small scar. Not a bad trade.

When the year 2004 began, I never guessed I would be doing anything other than watching my baby grow, learn and become a toddler. Life can surprise you like that...you think things are going to go one way and then bam! everything you know gets turned upside down and you're left scrambling to put the pieces back together in a way that works for you.

So maybe now you're wondering what surprise my life gave me. It gave me breast cancer.

What were the odds of a pregnant woman having breast cancer? I'll tell you because I looked it up when I first found the lump. The odds are 1 in 2000. Yes really. With odds like that, does that make me lucky or unlucky? It all depends on how I choose to look at what's happened to me since cancer darkened my door.

I have met some truly wonderful people because I have cancer. I have learned alot about myself and what kind of person I am when things get really tough. I have learned who my real friends are and what they will do to help me and my family simply because they love me. I have learned that my husband loves me because of who I am on the inside, not just who I am on the outside. Which is a good thing because let's just say my outside is in a state of change right now. But I'm getting ahead of myself.