Thursday, May 31, 2012


When I signed onto to the clinical trial I started in December they said because I'm considered a "chronic ovarian cancer patient", I would stay on the drug until "progression or toxicity." 

Today they stopped the drug.  Avastin is what I have been taking, along with the drug that they are testing to enhance the action of Avastin, called Everolimus. 

Tonight I have to read a lot of material about two other drugs that are part of a clinical trial and taxol, a drug I have had in the past.  Tomorrow I have to give my answer regarding which poison I am choosing to take, the new combo drug or the taxol. 

I have had to change my goal of beating this cancer to a goal of "containment."   My doctor used that words with me today and I'm glad she did.  Now I am sure that she is a straight shooter and I don't have to worry about her beating around the bush and equivocating when it comes to the important decisions. 

So, we hope to contain this cancer so it doesn't spread.   I have to spend some time absorbing this information, so I can understand how it will effect my decision making in the future. 

I have had the blinders on from the get-go about this cancer...that's how I have coped with it thus far.
All "cheery, can-do, rally-round-the-flag boys" stuff.  And it has worked.  Not to say that I am dropping this attitude, I just have to be realistic too. 

The reality is that few in my situation get out alive.  That is the cold hard fact about ovarian cancer.  It's a real killer.  Just as getting a diagnosis of breast cancer or lung cancer a few years back was a death sentence, ovarian cancer at Stage Three or Four is pretty much a death sentence.

Those of you who need to hear cheery news, who don't want to hear about dying or the sordid details of this illness, stop reading this blog now and don't ever come back.  I won't judge.  It's all right.  I totally understand.  Not everyone wants to talk about or listen to this stuff.  I don't even want to have to write it...but I am going to write it...for selfish reasons, it helps ME. 

It helps ME to put these thoughts and events in writing.  It helps me to get some clarity, to make decisions, to prioritize my life.  People have frequently said to me "too much information"...I know sometimes they are joking, but sometimes they mean it...I do share a lot of information...more than the average person, I know that.  If this stuff is too much information...don't read it.

Anyway, long story short.  I started having abdominal pains last week when we came home from the JRT trials and then had a fever to boot.  So I ended up in the Backus ER on Thursday.  They did exams and a CT scan, which showed that I had ascites (fluid build-up) in my abdomen and they spotted three lesions (my word, not theirs), where my last CT scan done in April had only shown one.  I also was having black diarrhea this whole time...from my last chemo appointment up until yesterday, so for almost two weeks.  This is not a good thing.

The doctor at the ER told me that the cancer was back.  It really hadn't gone, there was one lesion on my previous CT scan...but the level was low.  Now it looks like things are growing, which may have been there all along, just not big enough to show up on the scan.

My doctor is concerned that I have been having an upper GI bleed, quite likely a side effect of the Avastin, which is notorious for causing bowel perforations.  She stopped my treatment effective today while she reviews the Backus CT scan pictures with the staff at Women and Infants. 

She presented two options for chemo to us today and I have to review them tonight, weigh the pros and cons and make my decision.  She will call me tomorrow to see what I want to do.

No matter which option I take I will be going to chemo once a week instead of once every other week.  I will also need to have the premeds that make me drowsy and incapable of driving myself home, which means I'm going to have to rely on someone(s) else to accompany each time.  I have been enjoying the independence of driving myself to and from treatments.  This is something I will have to adjust to, having someone else there.  Pardon me while I take a moment to swear, rather loudly.....

There....that's out of my system.  I don't want to resent the person who is accompanying me to the appointments, that would not be right.  So I have to get my head straight about this. 

One option is a clinical trial thing...a combo drug.  If I choose that option I can't start treatment until the end of June and it won't be until the end of July before we know if it's effective.  This combo drug also has a number of side effects, including rash (highly likely), which may require taking an antibiotic; fever and flu like symptoms for a few days following treatment and some other stuff which I'm not remembering now.  Oh, it doesn't cause hair loss...and I had been looking forward to being bald again!

The other option is taking Taxol...a drug I have had for two treatments (12 doses).  I would get it every week instead of the every three week interval that I used to have when I was on it.  I would get a lesser dosage so the side effects would be lesser too....bone and joint pain; hair thinning; and diarrhea.  I get diarrhea from everything it seems, so what the hell?

Right now I am leaning toward the combo drug.  Just because if it doesn't work I have Taxol to fall back on, but if I take Taxol and it doesn't work, or stops working, I may no longer be eligible for the clinical trial.  Also, and this is a big factor, I am in good shape physically right now and can better deal with the side effects.  What if Taxol worked but then I got sicker and then had to go to this drug and deal with the side effects while being sicker?   I think I would like to keep Taxol as my "Ace up my sleeve"...I'm familiar with the side effects, they wouldn't be as bad as I have had in the past (and I dealt with them no problem then) and at least I wouldn't have to deal with being really sick from the cancer AND having to deal with new side effects.

It all sounds like I can plan things and have it all work out the way I have planned.  NOT!  I have been humbled into realizing that you can only control somethings....and you better control the things over which you do have control.  Sound like double talk?  I know what I'm talking about.

Anyway, I am feeling much better than I did last week.  The pain is no where near where it was, my bloating has gone down.  If the bloating can stay down for the next 28 days until I get the next treatment (if I choose that option), I'll be good as gold!

Oh, I would be horribly remiss if I didn't also include mention of the wonderful time we had at the Jack Russell trial two weeks ago and the fantastic trip to Maine we made last weekend, when Sandy and Rocky ran in the "Canicross" 5K just outside of Freeport.   We took the RV to both events and had a ball....we LOVE that RV.  Jane came to visit and watch the race last weekend.  It was great to see her, we haven't seen her in a couple of years!

We have some great trips planned coming up in June and July and August and Sept and October!  Several trips to Maine, which we absolutely love.  We are going to go to Maine Father's Day weekend, to take the dogs to try dock diving again.  We think Rocky would love it, if he could get past his anxiety about "strangers" being on the dock.  He loves to swim in our pool...he goes nuts in the water. 

Sandy is putting the pool up this weekend and the garden is going to be planted.  I'm going to plant my tomatoes and herbs in pots on the porch.  Sunday I volunteer at the "Drive to Survive" event to benefit the Ovarian Cancer Coalition in Voluntown.  My friend Frannie is going to join me.  Saturday I hope to make it to the gym...have missed going there since I started hurting.  I have been keeping busy doing work around the house, RV and in the yard.  So I haven't been a total slug. 

In short, I have had a set-back with my cancer.  This is a serious set-back, in that this is the first time the cancer has returned WHILE I was taking chemo.  Not good.  However, there are still options I can take to see if we can't rein this in and get it under control once again.  Looking to the future, my goal is to keep it my life and hope for the best.  If I get "cured" I will be pleasantly surprised.  However, I must be realistic and say that the odds of that happening are NOT in my favor.  When my time is up, it is my goal to be as prepared as I possibly can so I don't leave a mess for others to clean up and to know when it's time to say "when."

That's something we can apply to many parts of our lives...knowing when to say "when."



coup-on-the-go said...

I have no doubt you will continue to live your life to the fullest. Anytime you feel like whining, crying, screaming, swearing, raising hell, or anything, I am a phone call away. Driving service available at your request. Love you

rqueenMom said...

Put me on your list of available drivers. I am quite used to hanging around at hospitals.
Our motto with Kara is "have as much fun as you can for as long as you can." I am thinking of you, as I am sure countless others are.
Becky Grillo

SusieQ said...

OK...I read it and feel you are on the right track with that clinical trial and Taxol as your Ace up your sleeve. You have some great plans to look forward to and that's all any of us can do. Just keep putting one foot ahead of the other one and make the best of what you have...stay mindful of living in the moment and do Yoga and massage as much as you can. And then hope for the best. Call me.