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Archive for June, 2006

Child’s play

Z. is in the backyard playing this morning, she has afternoon art camp this week so gets to play all morning before having to get ready to go. First she took out a big cardboard box which she had made into a time machine for her and her pink flamingo Hobbes (formerly known as Fay, but she has changed into Hobbes because Z.’s been immersed in Calvin and Hobbes cartoons all week), but she quickly abandoned that idea for a wetter one. Fully clothed, including shoes and socks, she took the hose and put it at the top of her circular slide and turned it into a water slide. She and Hobbes are soaked from head to toe and in total bliss. Seeing her so happily playing and doing something at the spur of the moment that is so free of concerns gave me a temporary lift from the doldrums I’ve been feeling lately. Not sure what they are all about exactly, except that I do tend to get down this time of year. I think some of it is body memory (I think the body remembers what the mind tries to forget). Memory of the anguish and elation I felt at this time 9 years ago when Z. was born prematurely and in the NICU. Then the following year my first cancer symptoms began to appear the week after her birthday. Then 2 years ago my endo cancer symptoms appeared around this time. Hmm, guess that might explain a lot of it.

Probably doesn’t help that I spent the last two nights watching the documentary called A Lion in the House on PBS. It follows 5 children with a cancer diagnosis over a period of 6 years and 3 of them of them died during the filming period. The survival statistics for childhood cancer are much higher than the 40% of this sample (there’s an over 75% survival rate). Obviously it was a pretty intense experience to view this film, both from a mom’s perspective and a cancer survivor’s perspective. I wanted to see it, I’m glad I watched it, but it’s definitely left it’s mark. It’s hard enough to know what treatment and quality of life decisions to make for oneself, never mind trying to make those decisions for your child. And to know when to let go. Just horrendous anguish.

So, seeing Z. playing so happily in the backyard this morning, free of cares and in good health, was really uplifting for me. For right now, in this moment, all is good.

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Ah, my darling Z., you are 9 years old today! 9 years! It’s so incredible to me that you are that old already, but you have grown so much in this last year that there really shouldn’t be such surprise. Physically, when I look at you I see glimpses of the teenager in you. I see that same teenager in your mannerisms, the way you talk and in your total annoyance at my very existence at times too. I also see flashes of your cousin V. when she was your age in you sometimes (V. is currently 16 years old). That’s a good thing!

This past year was a much better year than being 7 was. You were much more confident, happier and much less angry. I’m sure it helps that I was no longer in treatment for cancer and your daily life was much more normal. You are still incredibly imaginative, if anything more than ever before. But you also have a much better sense of when it’s appropriate and when it’s not.

This was the year of the interesting hairstyles (the Donald Trump comb-over with barrettes was the most interesting) and the perpetual tail (knitted tube scarves worn around the waist, often adorned with various colored hair bands). One of your best friends this year is also a “marching to the beat of her own drummer” type of kid. Another is a kid with as wild an imagination as you. I particularly loved listening to your conversations in the back of the car when you both discussed each others huge imaginary families in a “I can top that” sort of way. I love how kids at this age talk in the back seat of the car as if there is sound proof glass between the adults and them!

You’ve had to gather up your inner strength to deal with the discomfort of orthodontia work this year and having to give up your beloved chewing gum. But you have taken it in stride for the most part, even when you’ve been pretty uncomfortable. You even had to endure your first shots of novocaine for the 4 baby teeth extractions that were needed. It was difficult but you were very brave and while it was hard for me to watch you so uncomfortable, I was so proud of how well you handled it all. You’ve come a long way from barely being able to open your mouth for the dentist when you were 5.

I love how you still go for my hand whenever we cross the street or walk in parking lots, even though you quickly let go as soon as we’re back on the sidewalk. I love how once in a while you forget that we are at school and your friends can see you and take my hand just because. I love how you decided that you wanted to take ballet and did so with serious enthusiasm, even if you didn’t want your friends at school to know because “it’s not good for my image Mom”. But when you had your performance last weekend and you noticed one of your good friends in the audience you smiled and waved at her and was glad to see her.

We have come a long way my dear, and I hope that this coming year is a wonderful one for you. I love you so very much Sweet Pea.

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Another school year over, today was the last day of 2nd grade and the last day of Z. being an 8 year old and she got braces yesterday. How much more can I take? It seems like she’s doing a year’s worth of growing in 2 days. Well, not really of course, but it does seem like a lot of growing up milestones all smushed together. She of course is blissfully unaware of all the growing up meaning to these things. For her it’s all about the excitement of school being over (I actually heard her singing “no more teachers, nor more books” in the living room this afternoon) and her birthday party, cake and presents tomorrow. And the annoyance of those “stupid” braces which are rubbing the insides of her cheeks raw. I’ve been pretty liberal with the ice cream and popsicles so that’s helped a lot.

This has been a good school year for her. 1st grade was rough, mainly because of my cancer treatments, but also the transitioning from Kindergarten. I had my surgery a couple weeks before school started, then a few weeks later went into radiation for about 6 or 7 weeks. I took a break (my decision, not my drs., but they said it was okay) between Thanksgiving and Xmas and started chemo a couple days later. That continued through mid-April. I took off my hiphat wig (which I wore mainly for her sake) during the first heatwave in June. While she wasn’t thrilled with my extremely short hair, it was the marking of things going back to normal for her. She spent much of 1st grade being angry, mostly at me, but also at anyone who dared to cross her path with even the slightest bit of what she perceived as negative talk or vibe. This meant she yelled at not only A. and I but her teachers, her grandparents, her friend’s parents, and her friends. She spent a lot of time getting “minutes” in school (like a time-out). Her teachers were very patient and understanding, yet firm in their insistence that she be respectful. It’s tiring just thinking about last year.

This year was very different. Before school started she told me that she did not want to get her 2nd teacher mad. Her teacher, while in reality a very sweet woman, has the reputation amongst 1st graders as being very strict. And she is in that she lets the kids know exactly what she expects from them. This was perfect for Z. at that point in time, she needed things to be very clear. While I won’t say that she never got “minutes” in 2nd grade, it certainly was not very often. She was able to focus on learning, having fun with her friends, and just being a kid. No more kid whose mom has cancer, just a kid. Periodically she’d be reminded of my cancer, things like my ct-scans or drs. appts. A couple of times she would check with me to make sure that I didn’t have cancer anymore, but mostly she’s closed the door on that chapter of our lives. I really hope that it is a door that stays closed, but I’ve been through too much to realistically expect that I’ll never be dealing with cancer again. I certainly hope that I won’t but after having two late stage aggressive cancers I know that my body knows how to do cancer all too well. The thought of her having to deal with it again breaks my heart. I try not to think about it too much.

9 years ago today I was 28 weeks and 6 days pregnant and in the maternity ward of the hospital trying to eat my dinner in the Trendelenberg position (head below my feet, somehow, don’t ask me how, I managed to eat soup that way!) to reduce the pressure on my cervix which was being held closed (not very successfully) by one tiny stitch. I was on an IV of magnesium sulfate to try and stop the contractions (mag makes one feel very strange) and lay there in a very dimly lit room trying to sleep. A. was with me but I sent him home sometime after midnight to try and get some sleep in a more comfortable bed than the hard thing they had in there for him. I think I fell asleep about 2am, and at about 4:30am I woke up to wetness, thinking, hmm, either I just peed myself or my water broke. Yup, after the nurses tested it with this special paper they said my water broke. Over 12 hours later at 4:46pm Z. was born. Despite her being 11 weeks early she was born breathing and crying (although she sounded more like a cat than a baby). I got a short moment to hold her after the neonatologists attended to her and before they whisked her off the NICU, her home for the next 8 weeks of her life. I clearly remember the mixed feelings of joy and anguish I felt that day. I never could have imagined her last day of 2nd grade and her 9th birthday. But here we are, we’ve been through a lot but we’re here and we’re together.

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Braces!!

Z., who will be 9 the day after tomorrow got her braces this afternoon! She looks so cute in them and so far at least is taking it all in stride. She picked out alternate blue and green ones for her front teeth. This is “pre” orthodontia so they are only on her 4 top and 4 bottom front teeth and on 2 top and 2 bottom back teeth. She still has to get the full set of adolescent braces in a few years. So we’re in this for the long haul! A. and I both had similar orthodontic issues so she was pretty much genetically destined for this. In fact at 3 years old our dentist looked in her mouth and told us to start saving up for college and orthodontia. I don’t know how sore she’ll be on her birthday but at least cake and ice cream are easy to eat!

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Remembering Cyndee

I found out today that a friend of mine died on Monday night from complications due to ovarian cancer. Cyndee and I originally met online, through a gynecological cancer support group called EyesonthePrize.org (we both belonged to the group’s mailing list support group). In February of 2002 we had the pleasure of meeting face to face in my home at a small gathering of participants of that support list. Two other friends I met in person that day, Sue and Bonnie, have also died in the last couple years. Both of them wonderful women with their own stories. But today I want to talk about Cyndee.

When I met Cyndee she was battling recurrent ovarian cancer. She was a little shy in the group, but responded to my daughter Z. (then 4 years old) and played a game with her called “snitchie monster”, a cute game that involved pretending to steal Z.’s food, that she used to play with her own (now grown) kids when they were little. While out for breakfast the following morning Cyndee told me that I was the complete opposite physically than what she had pictured in her head (funny how we have these images in our heads of people we meet online based on I’m not sure what!). She had pictured me tall and blonde (but instead I am short and brunette). I laughed over that one as I think I might be a completely different person if I were tall and blonde!

One of the difficulties of recurrent ovarian cancer is that it can often require fairly continuous treatment particularly as the cancer stops responding to one chemo and another is then tried. My sister L. (who died from breast cancer in 2003) was in a similar situation. She once told me that if she stopped chemo she would die, and in the end she had to stop chemo due to some serious physical complications and was dead within a matter of weeks. Cyndee was always very open about her decision process as to whether or not to pursue the next line of treatment. I remember at one point she was grappling about what to do next when she found out that her daughter was pregnant with her first grandchild. That gave her a reason to continue treatment, to live to see him born. Not only did she do that but she had a number of years to love and play with him. He was a huge source of happiness and light in her life.

In the end the cancer spread to her brain and she made the difficult decision not to pursue further treatment. She took the time to connect with old friends at EOTP and to say goodbye. She and I were able to tell each other what our friendship meant to each other, a special gift we don’t always get to have with people. We always think there is more time, that they already know, etc., but even when we know better (as I surely do) it’s still easy to put off. Or sometimes it’s easier to tell some people than others.

One of the difficult things about being involved in cancer support groups is that not everyone survives. I have lost way too many friends, but that doesn’t discourage me at all from continuing to meet and become close to other cancer survivors. The positives far outweigh the negatives, and honestly, even the pain and grief has it’s positive points. It reminds me to be thankful for each day that I am alive and the pain and grief I feel is in direct relation to how much love and joy I experienced with that person.

Cyndee, time to rest now, time to let go and let the light and peace wash over you. I love you my friend and can “feel” your hugs.

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Hope

I went to a conference for cancer survivors recently. It was a day of talks and workshops for cancer survivors and their caregivers, a celebration of survivorship. This is my 2nd year of going and I have really enjoyed it both times. This year the speakers were Wendy Harpham, an author, MD and long term survivor of chronic non-Hodgkin’s lymphoma, Howard Freeman, MD, who pioneered the “Patient Navigator” program in Harlem which addresses the disparity in cancer care for those in poverty, Phoebe Snow, the singer, who was caregiver to both her parents during their battles with cancer, and Vince Papale, a colon cancer survivor who was the oldest rookie in the NFL, making the Philadelphia Eagles team in 1976 during a walk in try out. The speakers were all inspirational (and quite funny) in their own ways.

I also took an afternoon workshop with Wendy Harpham called Nourishing Hope. Wendy has been in and out of treatment for chronic non-Hodgkin’s lymphoma for many years now. Her kids were 1, 3 and 5 years old when she was first diagnosed (currently her 2 oldest are in college). This past Thanksgiving she was diagnosed with her latest recurrence after her longest remission which had lasted 7 years. She’s written a number of books on cancer, including a book called When a Parent Has Cancer which is used at the Wellness Community for their Kid’s Connection Day (a day for kids whose parent or grandparent has cancer and their parents/grandparents, Z. and I have participated in it twice). Her most recent book is called Happiness in a Storm: Facing Illness and Embracing Life as a Healthy Survivor. She defines a “healthy survivor” as a survivor who gets good care and lives as fully as possible. (I should probably backtrack and say that the NCCS (National Coalition for Cancer Survivorship) defines cancer survivorship as beginning at diagnosis and lasting as long as one lives). Wendy says a healthy survivor embraces life as it is, finds happiness today, and hopes for a better tomorrow (sounds like what any healthy person might do).

Now people can be awfully weird about hope & positive thinking when it comes to cancer. Often people think that one has to keep a positive attitude in order to “beat” the cancer. Not true. However a positive attitude can certainly help one deal with cancer’s effects and enjoy their life much more. Also, if someone is in the depths of depression about their cancer they may not pursue treatment options or they may ignore new symptoms which can affect their cancer progression. Or they might not eat well or move around much which can affect how good they feel both physically and mentally. But the danger with the positive attitude thing is that when someone has cancer they may not feel all that positive so on top of the cancer itself, the treatments and side effects, and the emotional impact, they are now worrying that their dark thoughts are going to kill them! Or even worse, that they brought the cancer upon themselves by not living “positively” enough.

One of the things I love about the Wellness Community is that I am always comfortable there. Most of the people that I have met and become good friends with I likely would never have met in my normal daily life. We all have an almost instant bond, feeling familiarity and deep caring for one another. It’s a place where having cancer in your life a given. Everyone knows, everyone understands. There is empathy, but not pity, and certainly no one is scared off by your health status. We can talk about our cancer or not talk about our cancer with equal ease.

One of my favorite things at the Wellness Community is the art therapy. A mindfulness based art therapist runs the class. I’ve been going to this class since the fall of 2004, beginning shortly after my 2nd cancer diagnosis. The classes run for 7 or 8 weekly sessions and alternates roughly 2 months on and 2 months off. I have an art background but hadn’t been doing a whole lot in recent years. Going to this class really reawakened my creative spirit. The best thing about the classes (besides being free and the abundant art supplies laid out like a sumptuous buffet each week) is that it is a very safe, non-judgmental place to do art. Many participants have not done any art since childhood, some, like myself, have some kind of art or craft background. It doesn’t matter what one’s background is, there is learning and exploration to be done by everyone. These classes have brought back the joy of art making for me. To put color on a page, see the color next to another color, enjoy the textures, the movement, the light it all creates. To not feel that the piece has to “be” something, it doesn’t have to look like anything, and it doesn’t have to be “good”. It just is. Now it’s not necessarily easy to suspend judgment but our facilitator is really good at helping us work towards that.

Class starts up again soon and I can’t wait to get back to it! I always feel like I’m going through withdrawal during those times when it doesn’t meet.

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My daughter Z. (who will be 9 in less than a week) just informed me that she was going outside and to hold all her calls.

I decided to start a blog. I’m not a writer by any means, but have been thinking about trying this for a long while now. Today, not sure why today, I decided to take the plunge. So here I am!

I’ll use this first post as a mini-autobiography. I am 48 years old, married to a wonderful man named A. for 22+ years, and we have one child (Z.). A. & I spent about 2 1/2 years trying to conceive her, and after about a year or so of fertility treatments I became pg, had a miscarriage, and then got pg again with Z. When I was pg 22 weeks my cervix opened up and I went into premature labor. I was on completely hospital bedrest for almost 7 weeks when she was born 11 weeks premature almost 9 years ago. She was 2 lbs. 13 oz. and spent 8 weeks in the NICU but you’d never know it to look at her. I am a stay at home mom and actually I was not working outside the home for a few years before my daughter was born. I had been working an extremely low paying, pretty boring job as an assistant registrar in an art college when I developed a problem with panic disorder and agoraphobia. Over the years, particularly after my daughter was born and especially after my subsequent cancer diagnoses, I worked through my anxiety issues. The only one that remains is that I just can’t seem to get myself to drive on superhighways. Probably not that irrational actually.

I grew up in the country but have lived in a large city off and on since leaving home for college. I have a BFA and MFA in Photography, although most of my photographic work these days tend toward snapshots and scrapbooks. I have been doing some work with watercolor crayons and collage lately. I occasionally write poetry. While I have shown my work off and on over the years I have not made a fine art career a goal in my life.

I am a two time cancer survivor, two unrelated gynecological cancers. The first when Z. was 1 years old and the 2nd when she was 7. Both were late stage cancers, the first being stage 4b vulvar cancer and the 2nd being stage 3c endometrial cancer. I had 6 rounds of chemotherapy for my first cancer and went into a miraculous remission (miraculous because my odds of survival were very low). For the 2nd cancer I had a hysterectomy/lymph node removal, 25 rounds of external pelvic radiation, 3 rounds of high dose brachytherapy (internal radiation), and 6 rounds of chemotherapy. I finished treatment about 14 months ago and am currently “dancing with NED” (no evidence of disease) from both cancers. Less than 2 years after my first cancer my sister L. was diagnosed with metastic breast cancer. She died less than a year before my 2nd cancer was diagnosed. Currently my father is in treatment for a recurrence of prostate cancer.

With my 2nd cancer I started going to the local Wellness Community (an amazing place for people with cancer and their support/caregivers). I have participated in various programs there, art, poetry, yoga, family days, etc. I’m generally there a couple afternoons a week at the least.

Okay, so that was not so mini, oh well!

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