God is Love

Of this one I am sure. The nurse asked me in the hospital as I awoke from anesthesia if I had any religious beliefs of would I like to call someone in. I immediately thought of my dear friend Dale Sewell who is the paster at the Mercer Island Presbyterian Church, but I didn't think I needed to call on him immediately. That would make me feel like I needed last rights or something. I wasn't going there. Fortunately my friend Marilyn called Dale for me and he came up to see me stat. Dale moved to Mercer Island from Minneapolis the same time I moved to Mercerwood neighborhood. We we friends immediately as we settled into a new community. I found I could go to Dale and ask him anything about God because he has the educational background to give me some good answers at times when I felt abandoned. My own truth about God has never waivered. God is Love. When I have felt most alone I need only remember that if I give love I will receive. It doesn't matter what religion you are, everyone has love. I know what a powerful thing prayer is. I learned that when I was 5. My mom sent me to my room and I prayed to be sick so she would feel sorry for me. I got good and sick and the lesson has stayed with me all my life. Be careful what you pray for. My new mantra for this year (I make one every year) was and still is "dream big and pray for the results". So if you are wondering what you can give to me, give me your love and your prayers and I will be made whole. God is Love.
Hope this is not too heavy of a post, but it is always in my heart, and Dale is coming over to see me tomorrow and I haven't been going to church because it hasn't fit into my schedule, and I have found God everywhere so hadn't felt the need. Now Erica will say I am rambling again, but you will sometimes get the late nite version which is unedited. Life changes and I am sure this is a growing time spiritually for me AGAIN.

Girl's Night Out

There is nothing like having a close circle of girlfriends. "Pick a little talk a little pick a little talk a little, cheep cheep cheep talk a lot pick a little more" Guys can't stand it. So as often as is pysically possible, we girls escape to gather and gossip. Last nite we retreated to the Casita on the waterfront. Easy access, but miles from anywhere. We all have sons who grew up together, so catching up is always first on the agenda. This year a few of our sons graduated from college, so on that note I have to say I was at Sean's graduation from USC just a few days before my surgery. New beginnings...that is what life is all about. Divorce, moving, death, travel, health, birthdays and other milestones, all of these transitions have been bolstered by this dynamic group of women. But it isn't just gossip, it is the nurturing spirit of the mothers that we all are, that holds us together. Noi made the meal. She is fabulous cook and has endowed us with her Thai culinary skills for celebrations in the past. It wasn't dissappointing. Jodi brought first bloom from the rose bush commemorating the death of her son Joey, a symbol of life after death. Lynn brought a silver bracelett with words(soul...spirit...faith...harmony...hope....balance...peace...love...dream...trust...inspire)to live by. Karrey brought me a book "There is no place like hope" on living with cancer. We waited on each other and enjoyed the beauty of Mt Rainier in the background, sparkling water, and blue sky. Till we meet again ladies, your presence is my present. I love you all.

Chemo starts

Friday I go to get my port inplanted so I can begin my chemo treatments that afternoon. Looks like the research study is not going to be what I sign up for since I don't want to be on a placebo, and 1/2 the participants are. Steve will go with me and I am sure he is as scared as I am-he always sends me up the ladder first when it comes to heights. He is a good man and trying very hard to help in any way possible, but it is so hard to know what to do.
I found that regressing to childhood thoughts is helpful. When Sean was a baby he was colicy and I would bounce him all around, set him on top of the washing machine, or put him in the car just to drive him around the block. He gets a smile on his face when I remind him of how squirmy and fussy he was, but he also, quite charmingly, wants to recipricate the love and help to his squirmy fussy mom. I lay on the bathroom floor the other night unable to releave myself of surgery gasses, nor take any further pills by mouth for fear of losing it. Steve lay in bed exhausted by the daylite hours and my night vigil came to the door. "Knock, knock, can I come in?" "Sure if you can find room" (there is barely room in our bathroom for shower and toilet and I was gonna need the entire floor...)Sean slowly with out questions began talking me through breathing techniques I have learned in yoga and childbirth, and gently massaging my back (he gets massages 2x/daily when he is swimming-he must miss that since he has retired his suit). "What can I do, Mom?" "Just hold my hair."Finally, clutching my pillow for suppot, I was able to retch until I could do so no longer and then retire to the comfort of my bed. USC did teach him something, and a Mom could be no more blessed.

Doobie doobie doo

A friend, I won't name names, gave me a marijuana joint the other day. I had to ask my Dr about smoking it before I tried it, but he assured me that the gift was cheaper than the prescription we can obtain (full strength) and that it works for some people. I had thought that I would wait to try it when my chemo started and I was feeling sick and wanting to escape, but I was bloated, uncomfortable to the point of sleeplessness, and anxious so I got up, wrestled with the idea of taking more drugs if I could really do without, then went to get the joint out of it's hiding place.
My thinking regressed to Vietnam War days, my High School years, when smoking pot, concert going and free love was all the thing. Give love a chance. I feel I am regressing these days to the days of my youth. Perhaps the visual gives me stength as I was invicible in those days, carefree and a bit edgey. I suppose also I will be in trouble with some for even posting this chapter...

Life's a Bitch

Some would think that Life's a bitch means that it is the pits. I am having a stare down with my favorite friend right now, Bailey, our yellow lab-it's 3 am and she follows me around whereever I go whenever I go. She's a bitch (a female dog). Why is that a bad connotation? She has an attitude! If she wants something she lets you know by whining, barking, looking at you with sad eyes, or pulling you along & stubbornly smelling things when you want to be on your way. She is 12 years old now and needs glucosamine pills to keep the puppy in her step, but the fact is she is getting old for a lab and the years are slowing in her ability to get around, but give her a ball and she chases it, clap you hands and talk to her in a happy tone, and you can trick her into anything. Every day is "the happiest day of my life" for her. She has a bitchin' attitude and I am taking notes from her. Life's a bitch-it's just how you interpret it.

Dr. Kaplan joins our forces

The force is with me. All guns are armed and we are ready for battle. Chemo is the next step and just around the corner.
Today the family met with Dr. Kaplan who was superbly kind to meet on his day off to answer some rather pressing questions that only an oncologist can answer for a newly diagnosed cancer patient. The plan hasn't changed much from the Virginia Mason program that was unfolding, but the confidence and understanding of what is ahead is calming and healing. Thanks you all you vigilent friends who referred me, informed me, fortified me, and ultimately affiliated me with Dr. Kaplan. Having complete confidence in your doctor is like having a personal coach who will not let you fail.
Somehow ressearching this disease while I have the time and energy gives me power and assurances that I will get through this without too much trouble, yet we are still headed into uncharted waters, so don't forget me in your prayers. In that vein, here is what the recommended treatment chemo treatment (for those of you have want all the details). Standard chemo for ovarian cancer consists of two drugs called carboplatin and paclitaxel, which are given every 3 weeks for a total of 6 treatments. This controls the cancer and lowers the chance of it coming back, but long-term cure is uncommon. A newer drug called Bevacizumab (currently marketed under the name Avastin) has recently been approved by the FDA for colon cancer patients and is available in a clinical study for ovarian cancer now. I am working on details of joining the study, or getting into my own trial with this drug as well but will have to heal a bit longer from my current surgery before I am a candidate for the Avastin. Avastin is a supposed to both inhibit the growth of tumor cells, but heed the progress of the healing from the surgery. (Interupted by another call, and yet another endorsement for Dr. Kaplan-thanks Janet Stafford). More later...

Martha Thorsvig

How comforting it is to know that my family is being nurished by fabulous meals that everyone is lined up to bring. Every loving act is anxiously awaited around 6:30 (as that is the time Steve has managed to train our family to start salivating since he took over this duty and retired as Mr Mom years ago). Martha (Kathy) Thorsvig, I call her that since she is Miss Manners and knows everything about what is appropriate ettiquitte (you can blog her some questions if you have any now) has been assigned the coordination of dinners. Just in case you want to bring any, you might call her at 206-232-5298, or maybe, if we get this done right, we could put it up on the blog so everyone would know what was coming? In the past when I have made meals for others, it didn't occur to me the wide spread love that this simple act attained. People love to show up and talk and share food. Without the coordination of dinners, there could be an overwhelming amount of waste, or lack of refrigeration space (we figured that one out at Thanksgiving!) and we don't want that.
Last night, the best of plans laid, there was a bit of a miscommunication. As is usuall around dinner time (that is also the time everyone gets off work) my good friends the Giesbrechts, and the Schaeffers, arrived. Now those of you who know Val Giesbrecth know that she is a gourmet chef and everyone would love to be invited to her house for dinner, but I told her not to bring anything cause we have so much food and I was sure that someone was bringing a dinner (she also would have checked with Martha as she is another one of those perfectly organized people). Schaeffers had brought us cookies and wine-their specialty-and we were all set up for a nite at the Sussexes! Only someone neglected to relay to me that our meal had been canceled (who does that?). Around 6:30 my stomach was feeling that growl and Mike went to get some snacks. The mealtime passed and I went to bed but the meal would have been consumed if it had been there...in hind site, everything really does happen for a reason. I had overdone it for the day with a superwoman walk with my power girlfriends, Marilyn Dierickx, and Suzie Backes and we had run into Cynthia Schoonmacher who was off on an real estate scout and we went to see the house (but that is another story). I did end up going to bed earlier than I would have otherwise, to that end Steve gets all the credit (he was trying to get me to bed all day long). Little did I know that I would need all the rest I could get as I experienced the worst nite since surgery with releif and sleep finally taking over around 4:30 am.

I got my bell

Steve put my bell up on my headboard today. You can see how tech savy I am getting by whether or not the picture is up when you read this email. We are life in the fast lane here at the Sussex home, and EVERYONE is pitching in.

The bell....Sunday nite I got home from the hospital after a long surgery where they took everything out (uterus, tubes, lymph nodes, ovaries, another tumor, and I think that is all) and I got myself out as quick as possible from the hospital (even though I might not have been really ready to come home, I just wanted out of the hospital). I had transitioned from a button with self pain medication dispensements through an IV to 2 pain pills every 4 hours which I seemed to need any time I used my severed stomach muscles. When I arrived home, cathetor out, no IV, 32 staples, and healing scar, I suddenly realized that I was on my own in the middle of the night...Steve slept soundly, as usual, snoring occationally and tossing enough to make me think about sending him into the other room for the night. Erica, Dan and Sean were up watching TV, so I arranged with Erica to wake me up at 12:30 then again at 4:30 am. No one had thought about me helplessly waking up in the wee hours of the morning and having to get my own pain meds AND get up to go to the bathroom. Well about 1 am I awoke in pain and managed to get my meds and get up and walk down the hall. "Erica, are you there?" no answer..."Erica, are you there?"..."Erica! You're fired!" and I went shuffling back down the hall to bed. Well to give her credit, she made it to me just as I positioned myself back into bed, appologized and showed me her cell phone that was an hour early (good thing it was not still on Australia time) which she was using to alarm herself, gave me a back tickle (don't think I was up for a full rub), and promised to do better at 4:30 am.

Several other times, less notable perhaps, the phone was unplugged on my behalf, but no one answering it, or I could hear my cell phone down the hall (Sean and Dan had gone wake boarding-burr, and lost his phone into the lake, so my phone has been communal) and I would yell for anyone to pick up or HELP with no response. Later of course it is still my fault for not answering!

Today, as the kids are preparing to have a garage sale I am much more mobile, but I see my bell has been put in place and it is a good one!

Blazing new trails

Thursday, May 24, 2007
Blazing new trails

First off, thanks for supporting me with this unexpected new turn of events. I fully expect that I will come out stonger, smarter, and richer in my life than I ever 1st expected, and I am charged up to tackle whatever that means for me that is ahead.


I am embarking on an unexpected new journey of which my friends and family (that means you if you are reading this) are an intrigal part. I have been dealt a new hand and have much to learn as step one unfolds. I am learning rapidy the process of diagnosing and treating ovarian cancer. There are a multitude of sources including top doctors who actually live here on Mercer Island and shop at my local QFC, the internet, many many friends and their experiences, but what I realize most is that this is my own experience, not anyone elses, and that I must make some hurried, but educated decisions. So...thank you all for your imput (ie post your comments on my blog)-new learning experience.Thanks Eileen Sterling for your internet research on Doctors and the latest treatments. It really helped with my visit today with my oncologist (I had staples removed today and a CT scan) so I went in much more informed. I discovered that my blood had already been tested (CA125) and that the proposed treatment was advanced and proactive. Wow! I already have the very best team in the world, and they are optomistic. MOre to come...

I've begun a new journey that you all have become a part of. First off, thanks for supporting me with this unexpected new turn of events. I fully expect that I will come out stonger, smarter, and richer in my life than I ever 1st expected, and I am charged up to tackle whatever that means for me that is ahead.