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 An ultra-sound a week ago, showed that it was not fluid build-up, where as a week earlier, two liters of fluid was withdrawn.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.