good news!

My most recent CT scan shows the beast has taken a hike. That is two scans in a row with "unremarkable" in the radiologist report. I like being unremarkable. Gives me a sense of common. Does that also mean I have common sense? Probably not. I'll settle for being average. So, I'm still in the clinical trial, going every 3 weeks for Avastin/bevacizamab. Feeling pretty good these days, aside from being tired from all the busy-ness of the season. I am ever so grateful for my blessed grandchildren who rock my world and keep me tuckered out. They are my earthly angels for sure.

Alive and Well, almost

I have my first cold. I guess getting out to the Central Coast Quilt Show, movies, and shopping, wasn't such a good idea. But, I sure had fun while it lasted. I never realized how good I felt until I had to endure 6 months of chemotherapy. Now I need to address the issue of having a compromised immune system and even though my blood tests show I'm getting there, I'm still not up to "normal" white cells. I have to take it easy for a little while longer. I have plenty of projects to keep me busy and rest at the same time.

I wanted to introduce some of my peeps at my oncologist's office. On the left is Dr. David Palchak, whom I refer to as my "doc." When he's not killing cancer dragons, he is an avid gardner. We have recently shared some irises that I found in BH&G that bloom more than once a year.

Below is nurse Phea, who in her spare time ran a half marathon in Amber's name, for the Leukemia Lymphoma Society in San Francisco. This is her 6th, most of them full 26 milers. Look on the lower left side of her shirt for Amber Carter. Thank you, Phea. You are the bomb!
Next posting, I will introduce you to the rest of the gang. Until then, keep running, or walking or resting! I will be doing the latter for the time being.

No news is good news

This was and is my Dad's philosophy. He's going to be 94 in December, and apparently it has been good for him. Me? I am a worrier. I sit on the edge of my seat when things are going good. I await the dark cloud to dim my view when I am in full sunlight. I question reality, when is it going to rain? When will the earthquake hit? When will my cancer recurr? That's why I need Nettie. She's my therapist and worth every penny and then some. When I begin my session with her and claim everything is going ok, she must brace herself because I hardly ever really feel ok and yet I am the comedian. That must be my saving grace. My sense of humor. My friends know how I cover my feelings with a happy face, jokingly talk about cancer as the crab grass of the world. But in the darkness of my inner thoughts I am scared. That's why I write, it fuels my soul and allows the bad thoughts to run around and get tuckered out. Then they nap, and I am free until the next time.

In between treatments

Lately, I've been having some "stinkin thinkin," and need to snap out of it. My general health is improving daily and I'm getting out more and even taking a dance class. However, even though I realize it hasn't even been a year since my diagnosis, there is a little demon in my head saying I should be doing more. That's when I get depressed and don't sleep well. Good thing I see a therapist weekly. Somehow, she can listen to me and find out the root of my discomfort even when I usually can't put my finger on it. In this case, the root was about my mortality. I have been trying to take care of things or have them in place "just in case" I don't live very much longer. Now, I haven't been told I won't live long, its just that little demon that sits on my shoulder and whispers damaging things in my ear.
Its my job to push that "stinker thinker" off my shoulder and put tape over his mouth! Right? So, I'm trying to do that, or at least talk about it to those who love me, which are many. I continually surprise people one way or the other and they just keep staying close to me. I am truly blessed.

Ovarian cancer month

I just found out the month of September is dedicated to Ovarian cancer awareness. There is a special color, teal , that goes along with it. I went to the Arroyo Grande Hospital yesterday and met some dedicated people from the Cancer Connections group that are quite involved in their efforts to help others afflicted with any type of cancer. The goal is to help newly diagnosed people by giving them a person to talk to. Phone # 805-235-2997. We had a nice lunch after meeting at the hospital and supporting the awareness campaign led by Maureen Clancy, a survivor.
I also found out there is a new Ovarian cancer patient support group meeting at the Hearst Cancer Resource Center at French Hospital on the 3rd Monday of the month at 4pm. Hopefully I will go to it this coming week.
That's a lot of information and now that I'm feeling better and getting out more, it's nice to know what's available to me. Meanwhile, I keep busy doing what I want to do and feel good enough to do. I like that. I'm grateful that the experimental drug I'm on now allows me to feel almost normal (whatever normal is.)

Fall is here, leaves are falling

With September comes the hope of some decent weather and a time to plant some bulbs. I am not that excited to get the soil ready, but willing. My irises have been crowding each other out for months, but I finally got the energy to dig them out and separate them. They were really enmeshed, kinda like a dysfunctional family! Time to spread them out and give them room to grow. I ordered some new ones from BHG, talked my oncologist, Dr. Palchak, into sharing the cost. He's an avid gardner when he's not killing cancer. In fact, we share the thought that crab grass is kinda like the beast, only 3 ways to kill it: poison (chemo), removing it (surgery) or finally burning it out (radiation.) And, it only takes one root (cell) to start growing all over again.
Anyway, these new irises bloom more than once in the year. Cool!

I am still part of the clinical trial and have a treatment today. So glad the side effects are minimal. I really feel fortunate I am able to participate in this, not only for the opportunity to help others by putting a new weapon in the arsenal in the fight against ovarian cancer, but to keep the beast at bay in my own body. Thank you, Doc, for being the person to make this available to me and others like me. You're the bomb!

Good News!

I have some good news to share. The most recent CT scan, my 3 month post chemo, shows I am cancer free! I like the sound of that. Don't you? The facts are showing what I am feeling, energized and ready to grow hair, grow flowers, and grow optimism.
I must admit, the week began to crawl by from the time the scan was done and until my next doc. appt. I called his office just to check on my appt. time and found Jennifer, she schedules all my tests, appts., etc. She was there alone on a Friday and I never expected she could divulge any info to me and I shared with her how I supposed the doctor would give me my results at our appt. on Tuesday. She paused, then gave me the good news so calmly. I had called her on the way to see my therapist and instantly pulled over to the side of the road to react properly, which means I shouted, threw my hands in the air, did a mental happy dance, and proceeded to call my hubby to share what I heard.
We had both been trying to stay level, not getting too down or too up. If you've ever tried to do that you know how ineffective it is. Like being on a tightrope that isn't very tight. There's a lot of balancing involved and it is nearly impossible to stay put. Now, we were on terra firma, completely ecstatic! I hadn't realized until that moment how tense I had been. The perverbial ten pound weight resting on my shoulders was instantly lifted. I continue to feel light and sort of, dare I say it...normal? Not sure what that feels like anymore, but it must be close. Anyway, that's my story and I'm sticking to it. Carpe Diem!

On my Toes!

I decided to have a pedicure and invited my daughter, Bridgett, to join me. We went for the polka dots to be frivilous and "summery." Even though most of the time my feet are too cold to wear sandals, I enjoy my twinkle toes at home. After all, one has to please oneself as well as look good to others. Besides, it was the only way I could get my busy mother of 4 to join me and have some mother-daughter time together. We really enjoyed catching up and getting pampered to boot!

My hair is growing back! I am almost all white/grey. No blonde left, probably could get it done, but I kind of like it so far. My husband loves the color, always compliments me on it. I'm just glad to have it covering my head again. I hated having a cold head.

On a serious note, I am due for another CT scan this week sometime. Waiting to be scheduled. Seems like I'm always waiting for something. I have been doing some physical therapy for

"reconditioning" after chemo. The therapist has no mercy! She is quite a taskmaster. Stands over me and makes sure I do ten of everything. I was really sore the first week. I have to get into shape for my grandchildren. Chasing them around is good cardio!

I'm going for cycle 4 of experimental therapy next week. So far, I'm pretty sure I'm on the drug, not a placebo. My blood pressure is higher, one of the side effects. I have never had any trouble with that before. I'm sort of glad because that means I'm getting the real deal. This drug prevents blood from getting to tumors. I hope for the best. It's hard to stay positive, but I have lots of support from all who love and care about me. We shall overcome!

This is a Good Day to Live!

Look Good, Feel Better

American Cancer Society, thank you. Hearst Cancer Resource Center, thank you.

Ok. I guess I feel better. But, It was sort of weird sitting there with other cancer patients. I haven't been in this situation much. Usually, I'm solo, except for Bridgett, my daughter, at my chemo sessions. I really haven't been around other women with cancer. This was a get together of myself and four others. Only one other woman had started losing her hair. I've been there, done that, have some growing back, in fact. The truth is, I am finally in touch with the facts. I had cancer. It was serious. And even though I'm done with chemotherapy, I know I need to realize there are such things as recurrences. But, I'm not living that way. I choose to live in the present, and right now I'm feeling pretty good. Still on the clinical trial experimental therapy, still on a short leash with my oncologist. Every 3 weeks I have therapy which is an antibody supposed to block the blood supply to the tumors. Confusing because I don't think I have any tumors anymore. But hey, I'm a work in progress. I can't possibly accept everything that's changed in my life in the last 6 months.

So, I'm feeling better, yes. Looking good, yes. Just for today, and that's all that counts, this exact moment.

Good News!

My CT scan showed nothing in my kidneys but iodine travelling through. Yes! That worry is going down the drain and into the sewer where it belongs. I've had enough worry to last me another lifetime. I'm grateful for the faith I have in my doctor, the wonderful people I have been meeting at the Hearst Cancer Resource Center. I am so lucky to have a place to go to that's free and I can get information, wigs, scarves, Tai Chi, Reiki, and support groups if I decide I want to go. So far I'm seeing a therapist (yes, I'm a California girl now) and really have a wonderful rapoir with her.

Even though I still am receiving the experimental drug every 3 weeks, the side effects are minimal and I can begin to get back to normal (whatever that is.) Still no concrete plans for France, but dreaming doesn't cost a thing and I'm still learning french with Rosetta Stone. It is a beautiful language and I'm enjoying the learning process. For sure I will go. Maybe not this soon, but for sure in the near future. Meanwhile, que serra serra!

Trials and Tribulations

Like Rosanna Danna used to say, "it's always somethin'." Gilda Radner suffered from ovarian cancer just like me, although she had so much trouble getting diagnosed, she was practically beyond help when it finally happened. Gilda's Place is in her honor and I would like to go to one of them eventually.
Right now I am waiting...my four phase CT scan of my kidneys took place on Friday and my appointment with the doc isn't until tomorrow to read the results. I have been trying to stay calm, not to worry (one of my Mom's favorite sayings) easy to say but hard to do. I go from "oh, its just the iodine going through that they see." to "I have tumors in my kidneys and I only have 5 months to live." Where do I get the 5 months from? Drama queen.
So, trying to stay in the moment, decided to blog it out. The next thing to think about is....
France! I am dreaming about a trip to Marseilles with my masseuse, Zabeth, who is going "home" in July and has invited me to come along. That sounds infinitely better that talking about a CT scan. Let's dream together! Au revoir!

Getting fit after chemo

Well, I finally feel like walking and exercising again. Even though I'm on a short leash with my doctor as I am still in the clinical trial, I still feel really well and want to get back into shape. I haven't gone back to the gym yet, but am trying to walk more and eat better. During chemo I ate whatever sounded good on the days I wasn't nauseated. Now I need to tweak my diet a little to include greens and proteins and put the mashed potatoes and gravy back on the back shelf. Hooray!
My hair is growing back and it's either blonde or white! I have about a quarter inch sticking straight up. It is enough to keep my head a little warmer at night, but still pretty scary looking so I usually wear a cap. Tommy has been helping me with transfer tatoos on the back of my neck below my caps. The nurses and staff at the doc's office never know what to expect from me. I keep them smiling and its good for all of us. I look forward to the summer months and my energy returning so I can be with my grandsons and Ella more. Carpe Diem!

Surreality

I found a new descriptive word. Is it because of the tenth anniversary of Amber's death on June 10th that I have this skewed take on life? Or could it be the next step I am about to take in the clinical trial I'm in for ovarian cancer? Or maybe it is the visit to the high school where I gave 3 scholarships in honor of Amber's life as a dancer and lover of education. Or was it walking on the campus with a scarf on my bald head as Amber did and got stares from her peers and a sneering comment, "nice bandana!" from a clueless girl passing by?
Clearly I have issues at this time of my life and probably shouldn't write when I feel this way, but I have to, because that's what I do to deal with it.

Last chemo is a wrap

I'm grateful to have finished the 6th cycle of chemotherapy today. I didn't have to miss one cycle, held my own with the big boys, carboplatin and taxol. I didn't do it alone. I had my patient daughter, Bridgett, with me for every single one. Even after her own pregnancy ended up in a c-section, she made it to my April 28th cycle, Ella Amberley only 1 week old, came along. Her amazing dedication and love for me and seeing to my every need, made this experience tolerable. And to be able to come home to my husband after these treatments, when I couldn't even think about food to sustain me, he would console me and run through the list of possibilities one more time until he came up with the perfect one.
Even though I will continue with the clinical trial, at least the worst is over, I hope.

I'm still a Mother

Everything I was BC (before cancer) is the same as it is now. Since I'm still doing chemotherapy, with one treatment left this month, technically I'm in a holding mode for diagnosis. The last CT scans showed nothing "suspicious" a cop-out way for radiologists to be safe when writing their reports. The way I see it, I either have it or I don't and I prefer to believe the latter. Just say that I'm not suspicious of the suspicious. The severity of side effects and the number of odd differences in my physical self can attest to the fact that the drugs have shaken up those crappy cells determined to eat away at my good cells. I'm confident I am receiving the immunotherapy (mystery clinical trial experimental drug, Avastin) and it is vacuuming up those deceased cancer boogers and I am blowing them out of my nose. Interesting theory, eh? I will have a news conference on my findings and opinions when I have the time to talk to my committee that lives in my brain and keeps me awake some nights until I scribble them down haphazardly on a bedside notepad in the dark.

Meanwhile, I will enjoy the next week and a half I have before I go in for my last treatment and that includes being honored for the chance to do the best job ever: being a Mother.

Chemo 101

So, here I am. I've gone through the surgery, staples are gone that looked like a zipper on a pair of jeans. I'm left with a line and dots on each side, sort of a strange tattoo leading from my belly button down to my pp's (private parts.) I have a few smaller places where the laparoscopy was done. Oh, and a neat little saucer shaped port on my right side of my chest just above my bra line (I made sure my surgeon saw where to put it by wearing my fav bra into surgery, which mystified all the nurses.) I am healed, so to speak, and onto chemotherapy where every 3 wks I sit in a recliner and watch the drip of drugs ministered through the port that will help me tolerate the 2 chemo drugs that will follow. This is my protocol which is defined as correct procedure, but in this case its the combination of drugs specifically designed for "my" type of cancer, ovarian. For some reason, I feel a need to run and hide the morning before this all begins, but I don't and now I've done this 5 times with 1 to go in May. I watch the people in adjoining rooms and get scared. Will that be me someday? They are so sick, ematiated, pale, bald, a cold stare on their faces. I can't relate. Maybe I'm a fool to be so silly, but I just have to find some humor to hide the stark reality of this terrible disease. I am constantly reminded of how I have it so much better than most of these people I meet here. Some are unable to continue chemo for health reasons, they wish they could be having the nausea, constipation, diahrea, hives, anemia, and all the side effects I go through every 3 wks. I am humbled. Yet I want people to know this is not a piece of cake. I must be honest, explain not complain, because there are lots of us going through this and trying to stay "normal." Because our lives have been turned upside down, our families lives have been as well, our friends want to help and some do and some don't and some just forget you exist. But, its part of the nature of the beast, the boogey man, the devil disguised as rogue cells attacking the good ones. I didn't chose to have this happen, I wouldn't wish it on anyone. But, it is what it is and it's happening to me. So there.

After surgery, chemotherapy

So, I'm on a path I know so well as a caregiver, not a survivor. My experience is on the side of the hospital bed, not in it. But, hey...I'm not calling the shots. The Universe sees fit that my life needs a new wrinkle. At 58, I'm still learning how I am NOT in control. However, I refuse to go down without a fight. I'm pissed! This is such a nuisance. I was just getting the hang of being a senior and enjoying those fabulous discounts.
Once I recuperate from the surgery where they took out a bunch of stuff (and I still didn't loose any weight) the name of this game is wait. Wait for 3wks until UCSF checks out my biopsy. They find traces of cancer cells in my abdomen and pelvis. The visit with my oncologist is not a happy one. I'm still peeved, but now a bit scared. He really puts it into perspective. Dr. Palchak says this is "serious" and I believe him. I try not to sink, my Bridgett's eyes are so big and full of tears. My Tommy is clearing his throat and quiet.

Surgery, waiting

Three days before Christmas last year, I underwent a hysterectomy. Turned out I had a tumor behind my uterus the size of an orange.After having a routine pap done, the nurse practioner suggested I have a uterine ultrasound. That was just the beginning. That same day I got a CA 125 blood test done. The next morning she called me and suggested I see a gynecological oncologist. Wait a minute! I know what that means, let me sit down here and ask a few questions. My head began to spin, I got a little out of breath. The CA125 was elevated, that had happened before about 6 years ago...when I had my ovaries removed along with a benign tumor on one of them. But, what does it mean this time? I had to get some info fast. I called Dr. Dan and he said I needed to get the tumor out. I didn't want to hear that. I wanted to go back to my Christmas planning agenda, shop for my grandsons, anything but have an operation! And, to go to a specialist in Santa Barbara, no way.

This shows how little most people know about things. They were cutting me loose, sending me away. Getting rid of me. Well, think again. I have options, people! So there. I made some more phone calls, and ended up with a complete stranger from Hearst Cancer Center telling me I could have a biopsy done right here. She gave me a doctor's name, Safarik, an OB/Gyn right here in Pismo Beach.

That's how I ended up having surgery about a week later. It all happened so fast. We had Christmas a week early, the boyz love that part. I was home on Christmas Day, recuperating from having my appendix, gall bladder and uterus removed along with a few tumors. 95% the good Doctor said, but wouldn't commit to what the 5% left was. That was to be revealed much later.

One day at a time

When I wrote and published the book This is a Good Day to Live, it was to honor my daughter, Amber, who at 18 was diagnosed with Hodgkin's Lymphoma. After many years of chemotherapy, including a stem-cell transplant, she died on June 10th, 1999 at the age of 22. At that time, I felt like my own life was over as well.
Fast forward ten years and the sale of over 400 books, and the inception of the Amber Carter Memorial Scholarship set up at the Arroyo Grande High School in 2000. So far giving over $12,000 in scholarships to Dance Company students.