Infusions
I’ve interacted with a variety of professionals, and have decided to do some form of a fourth round, in order to get my CA-125 number down lower than the last reading of 38. It will be tested again on Tuesday morning, with other labs, before I see my gyn-onc, Dr. Guntupalli, and have infusions. I’m thinking if I can get Dr. Guntupalli to reduce the dosage on Doxil that might be cool. However both Dr. Parmar and Dr. Soles also did bring up the idea that really I handle it quite well, my heart might feel weird in the first week after treatment but gets better after that, and plus Dr. West has “prescribed” Ubiquinol/CoQ10 to help my heart, which I can really tell does help. So we’ll see. Deb, my counselor from Steps Through OC, said that most women in recurrence that she speaks to are scheduled for six rounds not four, so I’m already ahead of the curve as far as that goes. So that’s where I am at this point.
PARP Inhibitors
Regarding PARP inhibitors, two out of three naturopaths are not sold on the idea (Parmar and West), one out of three (Soles) thinks it’s worth a shot. The STOC counselor has heard really good things about it prolonging “progression free survival,” especially from one patient who is also a doctor who has said something like, “The data is excellent.” Additionally the Clearity Foundation, which provides the service of Steps Through OC, has a lot of research articles available to wade through, and I’ve only done a little bit of wading so far. Here is a link to one of many. In any case, for me PARP Inhibitors wouldn’t start until after my last treatment of the fourth round on October 29. So I have some more time to research and get it figured out. I will be discussing them further with Dr. Guntupalli. I also have an appointment with a research scientist via the Clearity Foundation for tomorrow to discuss that, Doxil, and any clinical trials she knows of that would work with my or my cancer’s genetics.
CT Scan
I will have a CT Scan tomorrow for Dr. Guntupalli, to see how things are going. Frankly I can’t imagine they’ll be able to see much of anything with the CA-125 being as low as it is. But I guess that is part of standard protocol.
Naturopaths
I will have the quarterly big panel of blood work / labs done on Wednesday in preparation for seeing Dr. West next week, so I will be able to discuss these things more fully with her then. Overall Drs. Parmar and Soles are a little more flexible, recommending fewer supplements, and a less rigid dietary regimen. And Dr. Parmar has been a naturopathic oncologist for a long time now, so I might start leaning a bit more towards his recommendations.
Mountains and Parts
In other news we’ve been up in the mountains for a week doing work and vacation, which has been nice…,
…and also sort of triggering for me.
Recurrence has been hard, psychologically. I have parts that really don’t want this disease, don’t want it to even be “chronic,” know it could be terminal, know there are no crystal balls or guarantees about anything, and so that part or parts are kind of scared, are mourning the possible loss of potential and time, especially when contemplating having maybe 5, maybe 10, maybe 15 years left on the planet. No one knows for sure. I was going to be one of the outstanding ones that treated it and it never came back. But it did come back. That is pretty normal actually, to be expected actually. And that pretty well sucks actually. So the grief that comes up is along the lines of “How many more times do I get to come to the mountains?” Or “We have talked about moving to the mountains. Will we be able to do that?” Etcetera.
And yet, as Tolle says, “You can always cope with the present moment, but you cannot cope with something that is only a mind projection — you cannot cope with the future.” Or similarly, as Jesus said, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”
Now.
Just be here now.
There are no guarantees for any of us. I might not die of ovarian cancer. I could die before then from any of a number of possibilities. We all could. So be here now.
Now.
If only I could remember that….
Dear Andrea,
Thank you so much for sharing. You have been in my awareness. I SO resonate with how you ended this post. With the awareness that none of us are guaranteed tomorrow. Only Now. I first realized this when working at the hospital and going to the ER for a family in grief after an accident….
Yes, may we all REMEMBER this, and thus truly live now.
With love,
Lynn
LikeLiked by 1 person
Thank you Lynn! I appreciate your support! ❤️
LikeLike
Hey, Andrea… Deep stuff you got on this post. You are right, of course. It’s so easy to forget that NOW is all we can safely count on.
I am sorry you have to be so proactive with your own healthcare. But, I am also very happy that you are… It’s definitely a full-time job. I get dizzy just reading all you have to do and read, and all the places you have to travel to and the people you have to meet to keep informed and treated and heard. Not to mention the decisions you have to make.
I am in awe of your travails. See you soonish, I hope.
LikeLiked by 1 person
Merci Patou! Yes, soon!
LikeLike
Prayers continue daily…thank you for sharing. Love the hymn, “Day by Day and with Each Passing Moment, Strength I find, to meet my trials here”….(look up the rest of the words….a comforting and peaceful hymn!) Love you dear Andrea!
LikeLiked by 1 person
❤️🙏🏼
LikeLike