Conquering Cancer in the Time of Covid
#10 Kindness
Well, I’ve survived Dose Dense AC Chemotherapy. Hurray! I’ll never do that again. Partly because I can’t. The poisons are so toxic that there’s a lifetime limit on how much of it anyone can have. And partly because I’m counting on the universe cutting me a break and not sending me anymore of this delightful disease. The first 3 rounds were difficult, as you know, but I bounced back strongly and quickly. This last round really knocked me down. For the first 3 days I hardly had enough energy to open my eyes. My lids were so heavy. Those were pajama/couch days. I just dragged myself from bed to a chair to a couch and back to bed. As I started to turn the corner on the energy front, persistent nausea refused to vacate the premises. Thanks to her company, I’m now hovering around my pre-pregnancy weight. I haven’t tipped the scales in this vicinity for close to 39 years. It’s not an unhealthy weight for me — I lived in this size body for quite a long time, a long time ago. But it’s a big change from where I was when I started this adventure. Once again, I want to sing the praises of my cannabis meds for nausea. They’re the only reason I’m still tipping the scales in a healthy range. I have a rather extensive assortment of pharmaceutical anti-emetics but nothing works as well as good old MJ.
I finally started my return to the here-and-now a full 8 days after the infusion. I felt hungry again and my nausea guest had finally checked out. I breathed a deep sigh of relief that, having reached what I hope will be the rock bottom of this journey, the days ahead would get continuously better. So we ordered a yummy take-out meal and I looked forward to some nutrition and calories. Not too much to ask, right? Don’t be silly! This is my story and nothing has ever been that easy…so far. My delicious salad, which I regularly enjoy from this restaurant, tasted like cardboard — or I should say had no flavor at all since I’ve never eaten cardboard and have no idea what it really tastes like. No amount of balsamic dressing improved it. I remembered reading a suggestion somewhere about not eating your favorite foods during chemo because the tastes would be altered, so I just chalked it up to that. It was disappointing but not unexpected. But then, the next day my tongue was white. Odd. So I mentioned it to my sister who immediately knew it was thrush. Oh goodie. Another new experience. Fortunately, my Dr. ordered meds for me early yesterday and I think they’re working. Dinner last night had some hint of flavor and today I think I see some improvement on my tongue.
It’s time to start the planning process for surgery so hubby and I met with my original surgeon as well as the surgeon the oncologist recommended. We had to wait over an hour before she joined us in the exam room but I don’t really mind that from my doctors if it’s because they don’t rush through patients and give generously of their time and attention. She didn’t disappoint on that account. We talked for a full hour and we liked her a lot. She gave me lots of reason for optimism, too — telling me that she thinks that right now, after the AC, I probably am already cancer-free. Loved hearing that! (Although if that’s true I wish I could skip the next 3 months of chemo torture). She doesn’t think it progressed to my lymph nodes — another really great thought, although that remains to be proven at a later date. And, at least as of now, it looks like I have several options on the surgical front. I have to meet with a radiation oncologist next, and then a reconstructive/plastic surgeon. And then I will need another MRI after all the chemo is completed to help clarify my status. After all that, we will be in a position to decide the best course of action, surgically. My situation is a little unconventional. Generally, the protocol is to do chemo before surgery — to shrink the tumor first, and then to be certain to get clear margins in surgery. Because I had surgery first (recall, the tumor was supposedly benign!) we didn’t get clear margins. So my surgery may have some unusual challenges if I choose a lumpectomy/breast conservation. What a shock! Lol.
On the home front, we now have 2 more new appliances installed. The frig and the microwave went in last Friday. It was a Covid-safe install. Hubs and I hung out on the patio while the work was happening and we opened all the windows and doors. Because the patio is directly outside the kitchen, we could safely watch and communicate, breathing clean air. We love the new frig! Phew. It was such an odd experience to research and choose it virtually without benefit of touch and feel. But we are quite pleased with our choice. In keeping with the usual “nothing is ever that easy” theme of our lives however, we do have a couple of hiccups. The left door of the frig was installed a smidge higher than the right. I was willing to overlook it aesthetically. But then we discovered that the extra smidge is just enough to prevent us from opening the cabinet door above. And even the right door is just high enough that its respective cabinet door is rubbing. The new microwave fits its space…and they didn’t even have to replace the hanging bracket. But the door has a smidge less clearance than it requires to swing open unimpeded. It opens, but it’s rubbing on the cabinet wall next to it. Eventually, we will get a little gouge in the cabinet and/or the micro door will scratch. But I really don’t give a hoot. I’m not sweating that small stuff anymore. FYI, here’s a shout out for WDC. I’ve been very pleased with our experience with the store in Agoura. Kirk has been really helpful and responsive, and even beat a price I found online. They sent out a repair team to fix the frig doors within just a couple of days. I had called Universal Appliance in Calabasas, too for some help finding a microwave to fit in the space we had and the salesman just blew me off — telling me he’d have to search the internet just like I could. I’m fantasizing about pulling a “Pretty Woman” scene on him. Remember when Julia Roberts tries to buy some fancy clothes in Beverly Hills and the saleswomen refuse to help her? She gets Richard Gere and together they spend a fortune elsewhere. Then she goes back to the nasty store to show them their “Big Mistake!” I called Universal for help with just the microwave but we ended up purchasing 3 appliances — totaling quite a few $thousands. I’m fantasizing about calling them on their “Big Mistake”. Instead I’ll just give them a really bad review right here LOL.
Yesterday was a pretty big day. My first of 12 rounds of taxol. And, on the drive to the doctor’s office I got a wonderful, unexpected phone call from UCLA Health inviting me to get my first Covid vaccine that very afternoon! Hurray! The infusion took longer than expected and longer than they will going forward because, once again, I needed to be educated about all the horrific potential side effects. That said, these horrors are less severe than the AC list. Phew! But then they administered such a huge dose of Benadryl, followed by Ativan, that I was in a bit of a zombie state. I could hardly open my eyes and focus on anything. So the taxol, which goes in last, had to be administered in a very slow drip to watch for potential dangerous reactions. The expected 2.5 hours turned into 4 hours in the chair. I was dozing the time away, comfortably drugged out in my lazy boy chair. But my poor man was consigned to the car pretty much the whole time, although they finally took some pity on him and allowed him in for the last hour or so. Happily, no adverse reactions — so far. And then we went directly to get my shot. It could not have been more convenient — at a location just a few miles from home (and as most of you know, a few miles away is as close as anything gets). We were a little early but they took us right away. The whole process was very well organized, efficient, and friendly and I got an appointment for the second dose right then. Kudos to UCLA Health. I’m very impressed. Husband got his first shot 11 days ago at Ralph’s and has been trying like crazy to get an appointment for dose 2 to no avail. UCLA Health won’t schedule him because he got the first shot outside their system. He’s really frustrated.
Here’s a public shout out to my husband/partner/best friend who was amazing yesterday under the circumstances. If you know him at all, you know that patience is not his strongest suit and inactivity is true torture. So spending an entire day banished to the car as my chauffeur and man-in-waiting is about the hardest thing I can ask him to do. But he maintained good spirits, was gracious, and incredibly supportive. In sickness and in health, right? After 42 years of health and fun, this is the real test and he’s passing with flying colors.
Last night was significantly less difficult than my AC experiences and this morning I woke up feeling quite well. Hungry, alert, and the best part of all, no nausea!!! The real test of whether the taxol is really easier will be tomorrow. Historically, the 2nd day has been the hardest, after the steroids and the rest of the pre-launch cocktail wear off. But I’m strongly optimistic that my journey will be smoother sailing from now on…at least until surgery in May.
This piece is titled Kindness and by now you are probably wondering why.
To close on a very positive note (as Nightly News does every day, which we love), I want to share with you how much kindness I’m experiencing. Every few days, unsolicited, one or another of our friends and neighbors have been bringing us food and gifts. We’ve enjoyed Xmas dinner, chopped liver, various soups and broths, fresh baked breads, baked ziti, etc. And we’ve received Amazon deliveries of gourmet delicacies from caramels, to fancy cheesecake, to popcorn, and assortments of nuts, dried fruits, fancy nut butters, candles, chocolates, granola…the list just goes on and on. So much generosity and love pouring in from those we cherish. Impossible to express how heartwarming it is. More important to express my profound and boundless gratitude! Thank you Thank you Everyone for your exceptional generosity and kindness.
More surprising has been the kindness of strangers…I really have to share this particular story because it really moved me.
As you know, our motorhome was rear-ended on our way home from the dealer. I’ve been concerned about the logistics of getting the coach to the shop to drop it off for the fix. It’s up in Valencia, about an hour away. One of us will have to drive the coach alone so the other can follow in a car to get home. I’m nervous about that. We have virtually no experience driving the thing yet. It’s huge and cumbersome and there’s a serious blind spot on the passenger side. Changing lanes requires the passenger to verify it’s all clear. Ordinarily, we’d just ask a friend to help us out and be the passenger. But with Covid and Cancer that’s another exposure risk I’m not comfortable with. So I asked one of the workers at the repair shop if we could compensate someone for pick-up and delivery and he told me no, they just don’t do that.
Well, the repair parts that were ordered in November are finally here. So Joel, the owner at Elite Coach, called to get us on the calendar. He is a gem of a man and has been exceptionally helpful through this whole ordeal. I decided to ask him directly if we could pay someone for pick up and delivery. I explained my position and my concerns and his immediate response was not to worry, that he would be happy to do it. No compensation requested or required. And he went on to assure me that I’m not the only chemo patient customer he’s had and I should be reassured that they will fully disinfect the coach before they return it to us. Such incredible kindness! The world is full of wonderful people and it’s the worst of times that brings out the best in all of us.
In gratitude and with love,
Jill
