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.
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
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.
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!
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.
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.