The paperwork to prepare my chemotherpy concoction must have been lost in the shuffle in the pharmacy on Friday morning. I was at the cancer centre at 8:30 a.m. to get my blood drawn to ensure my hemoglobin was above the magical number of 100. It popped right up to 104, and I headed upstairs to the chemo suite, ready to go.
But it didn't quite happen the way I anticipated. Even though I swallowed my Olaparib at 9:10 a.m., my I.V. wasn't inserted in my vein until after 10:15, and the chemical infusion didn't start until 10:30.
Now, I must have been anxious, all worked up about the number of needle sticks it was going to take, how round five was/is going to transpire and consumed by thoughts of how many more treatments I'm going to need (more on this later), because the waiting around took a toll on my nerves. For a brief point in time, tears streamed down my face and I thought, "Let's just get this going."
Once the whole process was underway, with thankfully only one needle stick, and the chemo drugs were dripping into my veins, I felt a little better. Go figure. But there's no turning back at that point. Now I just wait for the side effects to start - and then end - and I'll be done this cycle.
Above I mentioned I may need more than six rounds of chemotherapy. That's one of the options if my tumour isn't responding as well as expected. Of course, I'd have to go off the clinical trial to do so because the protocol only allows six rounds in conjunction with the Olaparib.
But the drug alone may continue to eat into the tumour and do that important shrinking work all on its own. And my CA-125 continues to drop. Last treatment it was 135 and this time it was 96. Still a lot farther from the less than 35 that's considered normal, but at least it's movement in the right direction.
But I believe in my heart, the best option for me is to stay on this drug. I fought so hard and prayed so much (as did so many others) to be part of this clinical trial, I feel I have to stay on it. I feel it's going to help stave off the cancer. And if for some reason, in a reasonable time frame, we find it's not working, we'll discuss what else I can do. I'll continue to work with the doc to figure out the best options for me. I still have untried treatments and opportunities to beat this evil cancer.
I think my anxiety is rising because of a number of additional reasons:
1. These last two rounds of chemotherapy and the side effects are bound to be a bitch. The cumulative effects of these drugs will compound to enhance all the negatives. And I feel less strong than I did at the beginning. It's all wearing on me. At least I can see the light at the end of the tunnel. That, and all the support I receive makes me feel I can do this.
2. I'm worried about how slowly my tumour is shrinking and the small increments my CA-125 levels are dropping. Of course, this is my interpretation. My doc and nurse seem pleased by my progress and that the cancer is responding to treatment.
3. I don't know how everything is going to work when I am done chemo. If I don't drop out of the study and continue with chemo, I'll go on Olaparib maintenance. This involves a double dose of just the Olaparib daily (so eight capsules in the morning and eight at night). I will not have a 10-day break every three weeks. I'll consume the tablets daily, with the fasting one hour before and two hours after each dose.
That means nothing but water for me (and of course, the eight giant pills) between 8 and 11 every morning and evening. That alone requires planning and coordination. No more sleeping in past 7:30 for me if I want a coffee or food in the morning. No more late night dinners, sipping wine or playing cards with drinks, snacks and friends in the evenings. I'll be a horribly demanding dinner guest. It requires planning, coordination and clock watching. It'll be one hell of a way to go on a diet - oh you can't eat for six hours every day.
I'm also a little worried about the side effects I'll experience when I'm taking just the Olaparib. While my doc assures me there have been few reported side effects, I could be different. He reassures me the acid reflux, general nausea and feelings of unwellness are probably due to the combination of the chemo and Olaparib, but he doesn't know that. I'm a guinea pig.
Right now, when I am on the Olaparib, I don't feel right. About 24-hours after I consume my last dose, I start to feel better and can enjoy food, drink and life again. I'm worried these bad feelings will continue when I go on maintenance and I'll have to get used to them. Sigh. But I guess I'll cross that bridge when I come to it.
4. Whenever I dip into my slump, the mood around my house seems to change. Michael commiserates with me and as a result, gets worried, anxious and slightly grumpy around the same time I do. Noah gets helpful and thoughtful. Tara gets clingy and loving. It's a weird combination - and some of easier to handle than others.
I understand the emotions and how hard it can be to watch me dip down on the roller coaster, but to be honest, sometimes I can't handle anything but my own feelings and pain. So please forgive me if I'm short with you, don't get back to you right away or avoid your well-meaning attempts to contact me. I shrink into my shell. It's the only way I know how to cope.
5. There seems to be no clear, discernible pattern to each round of chemotherapy side effects this time (unlike last year). I don't start to feel bad at the same time each round, I can't predict when I'll rise out of the slump, I can't even identify which side effects I'll experience since new ones seem to be popping up all the time. It's frustrating because it's not predictable. I don't know what to expect exactly, which makes it hard to prepare mentally and physically.
But in the whole scheme of things, I'm lucky. I'm still here. I have opportunities and choices available to me for treatment. I'm near the end of chemotherapy. I'm on what promises to be an amazing clinical trial. I have family and friends surrounding me, helping me face the dark days and chemo demons. I have a whole freezer full of delicious food from my awesome friends at work to make feeding the Bratschers a little easier. And I know I have a huge cheering section, clapping and encouraging me as I travel down my path.
And for all that I'm extremely grateful.
Tina
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