Dr. Visit

Michelle had a painful 1600 liters ( alot!) removed from one of her lungs today and is resting at home now. She was in quite a bit of pain and needed some pain meds.

Good thing, alot of liquid removed , bad thing pain.

The scan showed that the other lung is carrying as much liquid which can be removed when she is up to it.

Dr

Fluid remo

Today

....another quick update from Eric.

Michelle slept well last night with a little help from Tylenol PM ( stuff is great for getting over jet lag).

Michelle is still getting up a few times at night to go to the bathroom, but she has no problem getting right back to sleep. And, feels comforable taking the 5 steps from her bed to bathroom.

Things are moving right along at the house, Marlene was here at 8am to help with her chemo caps...and I delivered a new Porsche ( portable, lightweight wheel chair). Nurse delivered the infusion and will be back after her noon appointment to start "the drip."

Marlene is taking her for a Doctors appointment to remove fluid from her abdomen and lungs and then she is back at home for the afternoon....and a visit from her niece Samantha is scheduled for the evening.

Michelle is happy with the way things are coming together around her.

Update from Eric

Hi all,

Eric (her loving stepson) here. Signed into Michelle's account with her permission of course :).

Michelle finished her first week of the clinical trial last week and over the weekend her she felt weaker then she had been before. Her Ca 125 markers are up and from the scans Dr. Goldman presented yesterday as the first week of the trials have not halted the "caking" in her abdomen.

The 2nd week in the trial began yesterday and lasts through this week. Dr. Goldman's hope is that this really kicks in and slows the advancement down. She will take the Chemo and Parp Inhibitor for 5& 7 days and then is off for 3 weeks and then back on for a week.

Over the last few days, everyone has rallied around to ensure she has helping hands through the day and has the necessary support at night. Bruce and Marlene, her close friends and neighbors and Toni, her long time friend and house keeper are with her during the days and family visits are scheduled through the nights and into weekend.

After this little blip in energy levels, Nana seems to be settling for another round in the ring. Ding Ding

Pacman meets ovarian cancer

more later...

...I'm very tired and weak...

Second 'long day' of Clinical Trial #2

What's up?

Three days ago I had my 2nd 'long day.' An earlier blog provided information on 'long day #1.' It seemed that I was more relaxed this time because I knew what to expect: twelve blood draws, two EKGs, ten checks of my vitals, swallowing four PARP Inhibitors capsules, visit by nurse practitioner, lunch 'n dinner, and then release at 8 pm. Opps, forgot to tell you that I returned the next morning for a blood draw.

The best part about the day was the contacts with friends and family. I spoke with a brother in Florida as well as other loving friends. B and M came by, and as always, we always have so much to discuss. They also drove me home again, which I really appreciated because I was tired and weak.

The worst thing about this disease is my distended abdominal area. It is putting pressure on my heart and my elimination process. Not happy sensations! Could it be from the fluid build-up? An ultra-sound a week ago, showed that it was not fluid build-up, where as a week earlier, two liters of fluid was withdrawn.

I just reread the CT scan of three weeks ago and I have to accept the fact that this feeling of fullness in my torso is from the "worsening peritoneal carcinomatosis," direct quote from the CT report. Carcinomatosis is also known as calking. I am relying again on current and new treatment to once again dramatically rid my body of this #%$&! Oh, did I mention that I just called in Pacman to eat that stuff out of my body?! A suggestion from John!

There is so much to learn, monitor, second guess, and to get through. And for this, I receive the frequent hugs and 'pats-on-the-back' for being strong.

Thank you

Today is Saturday. On Monday I have/will experience/go through 'long day #3.'

Tuesday morning I return to the oncology clinic for a fasting blood draw, followed by an IHOP breakfast.

Wednesday, my annual mammogram (at this point, is this really necessary?)

Thursday, 'long day #4'

Friday, like Tuesday, I return to the oncology clinic for a fasting blood draw, followed by an IHOP breakfast AND, OPPS, stop the press! I'm going to have a CT scan one hour after the 8 am blood draw AND I can't eat four hours before the scan. Oh well, somethings just have to happen!

Real life: "not candy-coated"

On Monday of this week, two liters of fluid were taken out of my tummy and now, today, I will go back for another tap. I feel very uncomfortable with this fluid in my torso. I'm also unhappy that the fluid buildup happened so quickly. It was six weeks between the first and second tap (paracentesis) and now only five days between the second and third tap.

...One day later...

Again through the use of ultra sound, the technician and radiologist looked for fluid buildup. They could NOT find the hugh pocket of fluid that they found on two previous occasions. A tiny amount, yes. The paracentesis was not done yesterday.

Possibly an irritated bowel is causing the tenderness and the feeling that there are four to five pounds of fluid in my tummy. My medical team then gave me guidelines for gentle and healthy eating this weekend.

key words: ascites, paracentesis,

Clinical Trial #2

My previous blog let you know that my first experience with a Clinical Trial, (aka, CT #1) was short lived. Why? CT scan showed an increase in the cancer in my pelvic and abdomen, there was more pain, and my blood tumor marker (CA-125) had tripled one month after I began CT #1.

Yesterday, exactly four weeks since the last infusion of the CT #1 meds, I began Clinical Trial #2 (aka, CT #2) also at the same nearby oncology clinic.

The first of my four special days at the oncology clinic was yesterday. By the time I left, 12 1/2 hours later, I swallowed the 4 PARP Inhibitors capsules, had 2 EKGs, 12 blood draws, lunch and dinner, and was checked by the doctor. This is what they call 'the long day' at the clinic.

Thanks to friends and family for all the love and support. I will have three more 'long days' of this clinical trial during the next two weeks.

Why so much lab work, you may ask? To see which of the formulations of this PARP Inhibitor, also known as targeted therapy, works best in my body. In eighteen days, I will be given the best and specific PARP Inhibitor dosage and the new chemotherapy medicine, both oral drugs.

So after all that, how do I feel? Tired, bloated, loved, and hopeful.

Dear Diary,

When in doubt, write it down

Among the many qualities cancer survivors acquire on their path of healing is the ability to sense when things are changing in their bodies. As a result of scans and/or lab work, those hunches are often confirmed.

Dear Diary,

A few weeks ago I had pains in my abdominal/pelvic area. Medical staff checked it out and said it didn't seem to be serious. "Go on your trip and have a good time, call if things get worst!"

The morning after I returned, my doctor called while he was on vacation. The recent blood work was red flagged (my term) and get in for a CT scan as soon as possible, is what came across. Seven hours later, the CT scan was completed.

My dear Diary, the results are in. The clinical trial I began one month ago is not helping because the ovarian cancer is progressing. #@&#!!!!

And the pain and tenderness has been increasing. double #@&!!!!

So as of two days ago, I'm off of that clinical trial (aka, CT #1: Avastin and the mystery drug)

In two days I will again be in the doctor's office to discuss the next treatment plan, something I will probably refer to as CT #2,

So as I write to you Diary, we have to recall that during the past 26 months three out of the five earlier chemotherapy treatments had successfully reduced the cancer to a more livable level, such as 'no sign of disease' or 'cancer free' or 'remission.' And if it was possible then, it will be possible again!

My Dear diary, thank you for being here whenever I need to express myself. I bet you realize by this time that sometimes I just can't talk, I can only write. Thank you for just being a good listener. Now, I think I can go for that walk that I have been putting off all day long.

Image above:

Basket of writing pads and clip boards at The Wellness Community in Santa Monica

Stay tuned in for the 5 o'clock news

What's Inside

2010

Instead of having a PET/CT scan in four weeks,

continuing abdominal discomfort, among other things,

resulted in having a CT scan today!

Oh my, oh my!

I'm glad this technology exists, that is,

to be able to 'see' what's under the skin without a surgical procedure

But,

I gotta say,

I couldn't take my much needed afternoon nap

because I was wondering

what my teams of doctors will recommend in two days

Oh my, oh my!

This piece, “What's Inside" (computer assisted from original) was modified from, “A Day in the Life of Michelle,” mixed media, July 2010.

The art was inspired in Art Therapy recently at Premiere Oncology in Santa Monica, California.

How are you?

Point of Reference

2010

The gal in cancer support group e-mailed me, "How are you?

This morning the answer just seemed to be...

Fine...but I'm thinking about a 'growing feeling that something new is going on in my abdominal area'

But if I don't think about it, doesn't it kinda just go away, for a while?

I'm fine until I get the results of the next scan in a month, and the results of the somewhat helpful tumor marker within the month...

I'm fine ... because I'm going to meet my recently discovered family soon

I'm fine - I'm fine

This piece, “Point of Reference" (computer assisted from original) was modified from, “A Day in the Life of Michelle,” mixed media, July 2010.

The art was inspired in Art Therapy recently at Premiere Oncology in Santa Monica, California.

DNA Testing

A Moment in the Life of Michelle

As my guiding spirit and I address the topic of genetic testing, a wave of calmness bathes not only my body and mind, but my essence as well.

Take a deep breath………..Exhale…………….

We are both exploring the topic of DNA testing, first my spirit with innate knowledge, guidance, and support, and myself as I begin this exploration with strength and curiosity.

The first results of my family history, genealogy DNA test came to me, not by the Texas company that received my cheek sample in early June, but from Derek in Australia via an e-mail yesterday. He wrote that it appeared “we have a 5^th cousin match on chromosome 19 with Family Finder” and would I send him more information on my family genealogy.

How could this be? I asked myself as I began my investigation into not only the reference to the DNA test results, but to Derek’s specific question.

In response to my disbelief, this morning’s second e-mail from Derek included a copy from his results that includes my name. Hopefully, within a few days I will receive official notification about my genealogy DNA as it relates to people and places throughout the world.

The other arm of my DNA testing was revealed three hours ago when I received documentation from my new oncologist that I was BRCA2 positive as determined by a Utah company. That means I’m a carrier of a mutated gene that makes me more vulnerable (at higher risk) for ovarian and breast cancer. Or to put it another way, two of my three diagnosed cancers (ovarian, aka, primary peritoneal and breast) are a result of genes I inherited.

What else does this positive result mean? I will find out in time. But, I know I will be guided in this medical DNA search with my guiding spirit, doctors, and curiosity.

Take a deep breath………..Exhale…………….

NOTE:

This writing was inspired in Writers Workshop this week at The Wellness Community in Santa Monica.

The art was inspired in Art Therapy last week at Premiere Oncology, also in Santa Monica, California. This piece, “A Moment in the Life of Michelle” was modified from, “A Day in the Life of Michelle,” mixed media, July 2010.

In transition

Day in the Life of Michelle

Major Change in Cancer Treatment--

Three weeks ago an emergency PET/CT scan and tumor marker blood test revealed that chemo was not working and I was sent to another doctor for possible participation in a clinical trial. Two weeks of lab work, physical exam, review of previous treatment reports, and three MRIs resulted in acceptance in a clinical trial of twice monthly infusion of two drugs, Avastin and mystery drug.

Am I glad I qualified to be in the clinical trial? Yes, because I have new options. You might recall that during the past two years my previous oncologist took me through five different chemotherapy drugs for the cancer in my pelvic region. Three of the drugs successfully attacked the cancer, but as is the case with my particular cancer, the cancer 'smartens up' and the chemo becomes useless.

The 'best part' about being at my new medical facility for the clinical trial is that I live ten blocks from the clinic. The other 'best thing' is the place I'm going for the (four, going on five) MRIs is at an imaging center just a few miles from my home. Compare that to the forty minute drive, from door to door of my previous and wonderful doctor, and 'I'm a happy camper!'

My arms are providing the blood for analysis, sometimes ten vials at a time, and my blood vessels are the highways for medical contrasts and clinical trial drugs, however, the injured tissues from multiple poking on both arms are sensitive. Today my arms are healing through the color range of red, green, and purple.

The technicians say, "You have great veins, now just relax."

Yeah, right! I think. Just poke me in the right spot and then I won't tighten up!

The next few months looks like this:

Next week, blood draw and the following week receive the second infusion of drugs in the left arm while my right arm is used for multiple blood draws. I'm given multiple EKGs and my vitals are checked (heart rate, blood pressure and pulse) every 15 minutes

The following week: MRI with contrast and return to clinic for blood draw, aka "Safety labs"

This completes Cycle 1, about one month in length

Mid August begin Cycle 2 with "Safety labs" (multiple blood draws, urinalysis ), EKGs, check of vitals every 15 minutes during the infusion process of the two bags of liquid drugs.

The following week, "Safety labs"

Next week, drug infusion, and of course, Safety labs, EKGs, and check of vitals every 15 minutes during the infusion process

The following week, "Safety labs"

PET/CT scan in September

Begin Cycle 3, if everything is going as planned.

Are there side effects?

Yes!

Possibly! and

No!

This topic will be explored in the future

"Day in the Life of Michelle"

mixed media

about 11 x 14 "

July 2010

Premiere Oncology Foundation Art Therapy workshop

On a good morning, I can see ...

Yesterday I had my second meeting with my new oncologist. WE (my two loving supporters) really helped me feel taller, bigger, and stronger as I'm facing the multiple options and then ranking the best treatment plans or clinical trials. They both took notes and one, a cancer survivor, assisted in asking questions. While the doctor was out of the office we had a chance to review facts and perceptions. And then, reading the notes last night helped me to feel even more knowledgable.

While the oncologist and I will speak today with the results of his afternoon meeting with his colleagues on my case, I'm feeling pretty confident in my abilities to review, question, and decide the best course of action.

Oh, did I tell you there are other professional and personal contacts who are helping me through this process?

YESSS, Sir REEE!

Untitled,

Acrylic on wood, 2009

Currently on display at Premiere Oncology, Santa Monica, CA

"I need my chemo"

For the women readers, you might be able to relate to this: Even though I have NOT had a period in about twenty years, my tummy area feels like the first couple of days of the cycle. General pain, cramps--sometimes very sharp, and severe fatigue. But his time we can -- Blame it on the cancer!

My new oncologist and I will discuss and plan my next course of treatment this week. Heck, does it matter, what will be worst? Continued uncontrolled cancer in my torso, OR the loss of hair, neurophy and/hand foot syndrome, nausea, eating disorders, and IVs/or some other way to get the chemo into my body!

In any event, I will be graced with the presence of my family, friends, support groups and therapists, professional medical teams, medical plans, and that which can not be put into words.

Now What?

As an update of the last week or so, the fluid (ascites, a by product of uncontrolled cancer) in my torso has been increasing for at least the past week. Since I experienced this a year ago and ended up with a 4-day hospital stay, I suspected that the chemo I began at the beginning of June was NOT working.

On Monday, July 5, a holiday, I decided I would start my preparation for a CT-PET scan (limited food and drink procedure) on Tuesday, and prepare to show-up at my oncologist's office early Tuesday morning, all in order to get this checked out, without having to be admitted to the hospital.

I was very lucky because someone cancelled her scan and I was scanned by 1pm! !!!!! My oncologist had the report by Wednesday am and I was in his office by 1:10, ten minutes early !!!

Since I have been on five different chemos over the past two years, two of which did not work, he was sending me to Premiere Oncology, a place I go for weekly art therapy sessions. He said there may be some clinical trials that maybe effective.

My oncologist wanted to be notified who my new doctor would be so the two of them could have a discussion about my case and to whom he would fax my records. From the oncologist office I attempted to make an appointment with the best doctor who was doing ovarian cancer clinical trials. The time: 1:30. After 15 minutes of being on hold because the scheduler at Premiere was busy, I was told P..., would call me back. As I was leaving my dear oncologist office, the doctor who has help me to stay alive since 2004, he was faxing my records to the head doctor at Premiere Oncology.

As I drove home, there was NO return call from P... . I have run into that issue of not receiving a call-back in a timely fashion in the past with my GP so, then as well as yesterday, I decided to JUST show up! Did I tell you that Premiere Oncology is ten blocks from my home!

By 5 o'clock, the two doctors had spoken, the 19-page fax of my most important medical history was in the new doctor's hands, my vitals were taken by a nurse I know, and my new doctor, someone I had previously met on several other occasions, had completed the comprehensive, intake examination. The 'Ball is rolling.'

By this Thursday morning I will have an appointment to get the excess fluid withdrawn from my torso ASAP. It feels like there is at least a gallon of fluid filling my torso and pressing on my organs.

p.s. While my new doctor was examining me my phone silently went off at 4:30--I later checked it and it was P... returning my call. "Please call back to make an appointment" (Little did she know, I created my own appointment by being "Patient Active," an important concept from The Wellness Community, an international and local support program for cancer survivors and family.

Image: Detail of a custom made bed spread from Bali

"What's up?"...the sky

On a Good Day

Since my last blog in early June I completed my first month of "Chemo #5," Topotecan. It went like this; I was given an I.V. once a week for three weeks, and then one week of no drug, no visit to the doctor. Tomorrow I will return to the oncologist's office for the usual blood draw to check the white and red blood counts, among other blood components.

Most likely I will begin my second month of "Chemo #5" when I visit the doctor in the morning with my 'chemo buddies.' There has been no hair loss with this chemo and some fatigue, however my hands are dry and sensitive. Good ole 'hand and foot syndrome' has returned.

My life has been filled with researching known and unknown relatives and ancestors, truly an exciting activity. I feel like I'm the family historian and private investigator with only limited time to research, coordinate, and publish my discoveries. The one-page profiles and one-page individual timelines are being created, documents and photographs are being collected and scanned, in addition to creating my first YouTube movie. WOW!

Check it out: www.YouTube.com

Search with either my name, Michelle Leddel or my mother's name/name of the movie, "Miss Judy Jeannette."

So far, so good

Since my family had an extra 'firesuit' I was allowed to go into the 'hot pit' of the famous American Le Mans Series Monterey at Mazda Raceway Laguna Seca in Monterey, California, last month. The 'hot' in the 'hot pit' means a race is taking place and special rules and precautions must be followed.

My nephew was one of the three drivers for the six-hour race and I really had fun 'hanging out' not only here in the 'hot pit' but in the bleachers as well. Notice the four tires I'm standing next to. Right! They are big and heavy and cost big bucks!

Cancer? It was so nice to be away from the cancer world while I was at the raceway. But now that I'm home, I'm back on my chemo therapy medication of I.V. Topotecan. I had some fatigue after my first treatment four days ago, but that was about all. Well, 'something' continues to go on with my hands and feet. In three days I will return to the doctor's office for the second of three once-a-week treatments this month.

After one week of no 'JoyJuice' (my term for I.V. chemotherapy), I will return to the same schedule of "three weeks on and one week off."

Weekly art therapy, writing group, and group therapy meetings for cancer survivors continues to bring me support, inspiration, and compassionate and meaningful experiences.

In addition to all that, my continuing genealogy research is now being transformed into individual timelines, one-page personal profiles with facts and photographs, and even a movie on YouTube honoring my mother. Search terms: Miss Judy Jeannette, Michelle Leddel

Get Set, Ready, Go! Chemo #5 begins tomorrow

Today, remembering...

Memorial Day 2010

Soon, a new chapter

On Tuesday of this week, I had a PET-CT scan to follow-up on the previous scan of six months ago. You might recall that I have been taking Hexalen® chemotherapy capsules for 14 days and then no capsules for 14 days during the past six months. I called these my "ChemoCaps." By the way, this was my fourth kind of chemotherapy during the past two years.

Another reason I had this scan was because my oncologist had seen an increase in my CA-125 tumor marker numbers during the past month or so. (Note: going up is bad, going down is good)

In a few hours I will be in the doctor's office to discuss my/our new treatment plan. Along with me will be one of my dear friends. She will take notes, ask additional questions I might not have asked, and then we will get something to eat.

After dinner I will go to my weekly, Thursday night cancer support group. I'll tell you, on Tuesday after the scan, I headed over to my regular, art therapy cancer support group; I was feeling emotionally vulnerable and fragile. Again, one of the best places to be--in a support group!

P.S., If you can schedule your scans/tests early in the week, in some cases, you may get your results before the weekend. Waiting can be hard ... on everyone.