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Showing posts from May, 2018

Death, and Life After Chemo

Yesterday was the funeral for my best friend’s mother. Before dementia set in, Judy was a force of nature. Smart, elegant, powerful. When I met her she lived in downtown Baltimore in a beautiful townhouse filled with art and a big comfortable kitchen. My friend Arna and her daughter Mara lived with Judy for a while, and that was when I spent the most time there. At the time Judy was manager for a well-known law firm in Baltimore where her skills and demeanor were highly respected. But the last few years has been difficult. Initially it was her short-term memory. She did a pretty good job of masking her symptoms, but eventually it was clear she could not live on her own. Her three children helped her move so she could get the care she needed, though she was none too pleased with not being surrounded by her art and objects she loved. Unfortunately, as her dementia became more severe, she did not remember much of that life, though thank goodness she still knew her children. Judy would

Ring That Bell!

Actually, Hopkins doesn’t have a bell to ring on the last chemo, but my heart was singing! I just came home from having my last Taxol. Last week was the hideous Carboplatin, but this week should be a walk in the park. I’m jacked up on steroids and I have a Neulasta patch on my stomach which will inject me with white count boosting voodoo tomorrow. My clinical trial nurse said the 18 weeks of chemo would go fast, and she was right. There were some ups and downs along the way including a couple of infections and a five-day hospital stay, but negative is fading far more quickly than the positive. Positives? What in the world could be positive about ovarian cancer, 18 weeks of chemo and two years worth of immunotherapy drugs every other week. Guess what. Plenty. While no person in his or her right mind would choose such a thing, I have learned, and continue to learn, so much from this experience. I knew this already, but the experience solidified my belief that I am married to one of t

Rhubarb, sourdough and bed.

I was so sure today was going to be better. I had a good breakfast and Jerry and I headed to the Farmers Market. I wanted rhubarb while I could still get some. Jerry held my hand while we made our way through the market. We walked slowly and I really thought I was doing okay. But then it hit me. No amount of sitting down was enough. We did get rhubarb and bread and headed back to the car. But I just couldn’t make the last block or so. I sat down on some steps and Jerry got the car. Back home he put a chair in the elevator and got me to bed. I was nauseated and as sick as I have been throughout all of this. I took a zofran and some cbd oil and went back to sleep. I have yet to get out of bed since we got home. I’m honestly afraid. I’ve had two ginger ales and I know the hydration and the calories are good. and tomorrow will be better.

Shaky...

So much better than yesterday but still having a hard time walking across the room. I get so dizzy. So shaky. I should probably have a protein drink but that would mean walking across the living room to the kitchen. I just tried to take my breakfast dishes to the kitchen but had to put them down before I dropped them. I’ve been on the couch most of the day. Jerry went to a fly-in in Pennsylvania. So glad he went. He needs to hang out with more people than just me. He postpones so much to make sure I’m okay. I appreciate it, believe me. I know sending him on errands up and down the steps is far easier for him than it is for me, but it is such a big deal! He got me yogurt and blueberries last evening, going downstairs right after he had come up to check on me. Despite all the crap going on I know how lucky I am. I think about my friend Jeannie in California. She had an open abdominal surgery yesterday. Our friend Dave took her to the hospital and visited later in the day, but her kids

So close...

But today the end of this journey feels so far away. And in reality it is. Two years of maintenance. But I can handle it. But this last Carboplatin chemo is kicking my ass today. I thought I did everything right. Prophylactic medication, fluids, but today I feel like crap. I had hoped to bake cookies today, but that’s not going to happen. Trying to psych myself up to eat something. I made some bone broth. Maybe I will give that a try. And the neuropathy in my left foot is driving me nuts. Numbness, but the slightest touch hurts. When I walk it feels like there is a rock under my foot. I’m having one of those what did I do to deserve this kind of day. And I know I didn’t do a damn thing. And it will be over soon. At least the feeling sick part will be over. I will get through today and tomorrow will be better. And the day after will be even better than the day before. I guess I just didn’t expect to feel so bad. Maybe it’s time to go back to bed.

My Last Carboplatin

Barring a recurrence, (banish the thought!) this is my last Carboplatin and next week will be my last Taxol. My infusion today is in the new infusion center. It is very snazzy. Jerry and I have our own room. I’m getting pre-meds so likely I will become quite sleepy from the Benadryl. But then jazzed from the steroids. Before treatment started, we met with my clinical trial nurse. Maintenance will start the second week of June. She asked if I wanted to delay it and I said no way. I’m curious to see how I feel getting just the avelumab. My hope is the side effects are minimal, if any at all. Last night, knowing today could be the start of a not great week, I decided to make a nice dinner. Chicken curry loaded with vegetables. It was beautiful and delicious. We had a Honig 2012 Cabernet which might have been the best Cab we’d ever had from them. Tonight our friends Ray and Irene can’t go out, so I will make a mushroom risotto with the mushrooms we got at the farmers market and some

Moving, Fish and CBD Oil

Chemo is famous for giving people either diarrhea or constipation. Since I have been plagued with the latter for most of my life it’s no surprise that my situation has been close to dire. Nothing I seemed to do seemed to be helping. But finally, perhaps a combination of a variety of remedies ranging from senna to magnesium to flax meal seemed to do the trick. So yay me. I feel so much better! Or maybe it was the variety of fish last night. Spike Gjerde, of Woodberry Kitchen and Artifact Coffee, periodically hosts an evening of discussion and food and drink. Last night it was about fish farming. It was fascinating, but left me with so many questions, some of which were partially answered, but I still am not sure. The panelists ranged from producers to scientists who had interesting and important things to say. The wild fish in our oceans are being depleted, and if we are going to continue to have fish as a source of protein and Omega 3s, we need to look to farmed fish. There are vario

Burmese Food, Good Friends, and Beer

Chemo is known for its myriad side effects, and I am thankful mine have been few. I do have pretty bad neuropathy, particularly in my left foot, but I’ve been able to live with it. And after the first round or two, I’ve been able to eat well. Unlike a number of my friends, food still tastes good and I enjoy it immensely. Except for one side effect that had come on in the last week or so— a metallic taste in my mouth. It is pretty much always there. Even after a sip of water it is present and it’s unpleasant. I discovered the other day that iced tea does a pretty good job of masking the metallic tastes. I wonder if it is the tannins that kind of bind my tongue, which of course, made me think I should drink more Italian red wines... but I digress. Last night was a farewell dinner for a friend moving back to her native California. I totally get going home. She found a great job and will be closer to her family and numerous friends. A group of us met at a favorite Burmese restaurant in S

Support Group

I went to my first Ovarian Cancer support group meeting this evening. There were nine women along with a facilitator, who is a health psychologist. Two of us were new to the group, so the hour and a half was mainly taken up with introducing ourselves and telling our story. I was the most recently diagnosed person, and the only one who had not had a recurrence. One woman had had four recurrences, but there she was, looking good, feeling good and remaining optimistic. While I hope and pray to be part of the 20 percent or so whose ovarian cancer does not come back, if it does, I know, like these women, life goes on and keeps moving forward. They are all alive, and enjoying life. and that’s my plan, no matter what the future holds for me.

Reality Check

Thank goodness for Facebook groups and emails from friends. For the last several months I have been having powerful chemicals pumped into my body on a weekly basis. It’s killing those bad cancer cells, but it is doing a number on the healthy cells as well. And it is taking a toll. How could it not be? I am doing everything in my power to counteract the negative effects, but let’s face it. There is only so much I can do. The women in my FB ovarian cancer group woke me up. And brought me back to earth. This isn’t a cold or even the flu. This is some serious shit. And in reality, I am doing really really well. I have to stop comparing my current self to the self before all this started. In truth I may never be quite the same, and that’s okay, as long as I am enjoying life and all it has to offer. Yeah, so maybe it’s the steroids from this morning’s chemo talking, but I feel good, and I’m moving forward. I did scare the shit out of a group of nurses this morning. I was dragging me an

I was the Only One in Exercise Class

With no hair. And probably the only person who came close to bursting into tears partway through. I took a class today at Hopewell, a center for people with cancer. Everything is free and they rely on donations. Today’s class was for building strength. It was fucking hard. Even the parts where I did the exercises sitting, instead of standing, were fucking hard. Did I resent the people prancing around with their heavier weights and Lycra? Maybe. I guess mostly I thought what the hell were they doing there, but I suppose they have just as much of a right to be there as me. I stood when I could stand. I sat when I couldn’t, and I stopped when I had to. And yes, it left me pissed off and maybe a little, or a lot, disheartened. Am I the same person who used to bike 100 miles? Who could climb stairs without getting winded? Who could stand up and not immediately need to sit down from dizziness? Fuck this. Fuck cancer. Yes, I’m pissed. But I will go back to the class, and perhaps another

Getting Ahead of Myself

I suppose I should have known that when I fell again last night this might not be such a great day. I was sitting with my old girl Stella last night, and I got up and was very dizzy. Grabbed onto the wall but the next thing I knew I was on the floor. I am eating well, so maybe a side effect from medication, or delayed chemo reaction? I don’t know. So I went to bed and hoped for a better day. Today was the kinetic sculpture race and I love to see these artistic creations. I thought I was okay to do so. Sarah, Jerry and I walked down and looked at all of the marvels, but as we were watching the opening ceremonies I got dizzy and clammy. First, we found a place for me to sit, then we headed to the hill so I could lie down. We watched the sculptures race off, then headed inside of AVAM to hit the water fountain and the gift shop. Jerry knew I couldn’t walk home and he went and got the car. We got home and I’ve been on the couch ever since. Tonight is Pawject Runway, a BARCS fundraiser. W

An American in Paris and a Bright Red Face

Taxol is taking its toll. Woke up to a bright red face this morning. Feel like my eyes want to swell shut. Was not going to take steroids today, but think I will. I did my best to counteract yesterday’s steroids with Benadryl and got more sleep than I usually do after chemo— six hours. Not great sleep— mostly light sleep, but sleep nonetheless. Yesterday was heavy-duty chemo day and I met with Dr. T first. The decision has been made to change things up a bit for my last two rounds. Next week I will get Taxol and a Neulasta patch. The “patch”contains a small needle, which 27 hours after my chemo, will inject a medication to stimulate my bone marrow. Then, I will skip the the next Taxol. This will be repeated for the last round, since my mid-treatment scan was clear and my CA-125 is now nine, he is confident this will be fine. Me too. Last evening, after chemo, Jerry and I went to opening night of the touring company of American in Paris. I had won the tickets for being the third high