Cabernet and an Allen Wrench

Or at least I hope so. And honestly, I believe so. While on vacation I drastically lowered my dose of Lynparza to just 100 mg a day, taken before bed. My energy level soared. But then I came home, went back on my 400 a day and despite getting a great night’s sleep, by 10 am I was ready for a nap. So with a CA-125 of 9 (yay!) I went to see my oncologist today ready to discuss lowering my dose, but before I could even bring it up, she did. We discussed the fact that no one really knows what the best dose of Lynparza is, but she feels it is so effective I could look at lowering my dose. She suggested 100 mg in the morning and 200 at night. I readily agreed. We also discussed my weight gain. While I had gained quite a bit of weight pre-diagnosis, I am still tipping the scales at close to 20 pounds more than before the tumors started to make me look like I was six months pregnant. I know from years of being a Weight Watchers lifetime member the only way I lose weight and keep it off i...

I made a decision that was for me, a little scary, but oh so valuable. I was going on vacation, and with approval of my oncologist, I cut my Lynparza dose to 100 mg before bed, instead of 400 mg a day. Oh my goodness, what a difference! Our first destination was a few days in a Madrid, and we did a good bit of walking, including climbing a lot of stairs. At home, when I would climb from the second floor to the fourth I would need to lie down to catch my breath. From Madrid we went to Marrakech for a week. Each day was at least 10,000 steps (thank you, Fitbit) and many stairs and climbs. We stayed in a beautiful Riad, Dar Justo, in the Médina. No elevator, no problem. We had a wonderful guide who did an amazing job of showing us the city, giving us a history lesson, and steering us to beautiful sites we never would have found on our own. A far cry from the last time I was in Marrakech, where our guide took us to jewelry places because he was in search of a ring. Deciding to cut back...

Ever since I was diagnosed with ovarian cancer, I have felt urgency. Urgency to travel to places I haven’t been, to experiencing new things. And perhaps most important, to have a will. Even before I got sick I would talk to Jerry about this. I would say, we need a plan. We need a will. We finally started moving on it about a month ago. It is a more complex process than I had imagined. We own some property, have various bank accounts and then, of course, there are the cats who might be here when we are not. Just last week I was having dinner with my sister who brought up the topic. She informed me that my brother did not want to be her executor, and that meant it would be me. What else could I say but, okay. She talked about wanting to leave money to BARCS, the shelter where I volunteer, and that was just about the end of the conversation. Of course, no papers traded hands for me to sign. This was just a casual conversation. But then, this week on Monday, my sister seemingly disappe...

So, last Tuesday was the day. Spent the morning fasting in anticipation of having my port removed at 1 pm. We were told to get to the hospital at noon. At noon sharp, we checked in, and waited. And waited. And waited some more. I understand things get backed up, emergencies happen. But I was hungry. And anxious. I knew it was not going to be a big deal, but seriously, my flesh was going to be cut into, and I remembered that when I had the port put in I got a little claustrophobic with a drape over my face. Finally, at almost 4 pm, I was wheeled into the OR, given something to relax me, and before I knew it, the port was out. The dressing I was worried about changing did not exist because the incision was superglued shut. The area was numb, so no pain. When we got home I had a little snack because we were going out to dinner with our neighbors. By nightfall the anesthesia was wearing off and the site was a little sore, and that persisted for a couple of days, but in the scheme of ...

At the shiva house, my friend’s husband asked me how I was doing. Great, I told him. I told him I was on a PARP inhibitor and had high hopes for success. He said they worked for quite a while for his wife, and he wondered if she should have tried another. But of course, they couldn’t go back in time. His wife was gone, though she did not ever give up. And I’m still here. I might not ever do another long distance (or even short distance) bike ride and climbing steps is hell. But I’m here. And I know no one begrudges me my successful surgery and chemo. Or at least I think they don’t. And I know if the situation were reversed I would be happy for any friend or aquaintence. So why do I feel guilty? I look at my life and it is pretty wonderful. So why do I feel like crap? As I examine my feelings, perhaps what I imagine as guilt is just incredible sadness. I want the women I know who are struggling with this disease to get better, to have the results I have had. Just like my friend’...

This is a week that always brings back memories, good, bad, but always important. This is AIDS Lifecycle week. It’s the week in which a couple thousand people get on their bikes and ride 545 miles from San Francisco to Los Angeles after raising a minimum of $3000 to support services for HIV and AIDS. Years ago I had my left knee replaced and I knew I needed to rehab, so I said to Jerry, “Let’s do the AIDS Ride on the tandem.” He said something to the effect of, yeah, right, figuring it would never happen. While Jerry was a cyclist, I had not been on a bike in years and had never ridden the tandem that had been hanging for years in our garage. But we started riding. First a 15 mile ride that I thought would kill me. Then 20, 25, 50 and 100+ mile rides. We would be near the back of the pack on those long Northern California hills, but speed past everyone on the downhill. I had the cyclometer in the back, so uphillI I knew when I had to give it an extra kick to keep us from falling ov...

One year ago today I had my last Carboplatin. I still had two Taxols and six months of immunotherapy ahead, but it was definitely a day to remember. The last carbo was no picnic. I remember being pretty sick, but I knew that since my numbers were going down it was, indeed, going to be my last for at least the immediate future. This past year has been one of adjustment, acceptance, frustration and optimism. The end of December brought the end of my immunotherapy trial, cancelled by the drug maker. I was devastated. I was confident it was helping me, and it left me feeling vulnerable. But shortly thereafter my oncologist tested my tumor and since it was BRCA positive, she started me on a PARP inhibitor, Lynparza. Lynparza has come with its own set of pluses and minuses. The minus is additional fatigue, and initially it made me sicker than chemo. My doctor reduced my dose which helped with the sickness, and we have been upping it slowly. The fatigue, though, stays with me. Jerry and...