Ever think something is really funny until it’s not? Just after my first round of chemo my mother gave me two big tins of ginger cookies (this was just after Christmas). I had picked up some crystalized ginger for nausea and she thought munching on a couple of these with a cup of tea would help too. The ginger still sits on my counter all these months later. I’ve eaten maybe two pieces. One tin of cookies made it back to my daughter’s dorm and the other still sits in my dining room, largely untouched. One day my husband reached for them and I overheard my daughter say “you cant’ eat those.. they are mom’s chemo cookies”. I got a good laugh and some evil ideas. Since that time if there is say.. only one stick of gum left I will say “I need that for my dry mouth” hence our newly termed “cancer gum”. It’s much like drinking the last cold beer on a hot summer day. Nothing tastes better, especially if you know someone else (chemo cookie coveting husband) wanted it. I will sometimes (legitimately) ask the girls not to drink the last ICE in the house. This is a fruit flavored carbonated water with no calories, sugar or sodium that I love and there are days when it’s the only thing I want to drink right after a treatment. Mostly though, nothing is really just for me. It’s all fair game. Until I want to mess with my husband and will claim chemo ice cream. This all got me to thinking about all the products out there sporting pink ribbons and how people will go out of their way to buy them when realistically they do nothing for cancer awareness. Unless when you eat them you feel an overwhelming urge to donate or hug a cancer patient. I mean.. who is not aware of cancer? But.. you have to admit it is marketing genius. Which leads me to mention that if any of you marketing geniuses are reading this and think that’s it! Chemo Cookies! Cancer Gum!.. don’t do it. It would be morally and ethically wrong on so many levels. And also.. if you do, I want a cut.
The good news? Self inflicted carpal tunnel is not a reason to stop chemo early. The bad news? I have no excuse to stop chemo early. Ha! Actually I told my oncologist that I wanted to continue after coming this far and she agreed. My numbers were looking good and my hemoglobin is on the rise and I’m already feeling it. I have no idea how low it got because each week I’m told my numbers look good. I assumed that meant I was some kind of hemotologic savant, but apparently all it means is they haven’t bottomed out yet so lets see how sick we can make this chick before she cries uncle. I will assume my all time low was week six. That was the first time I really felt the full effects of all of this. Week seven (last week) was much better with only one bad day physically and one day when I was doing an internal one woman rendition of Camille .all day. It was all very dramatic and silly. Sunday and Monday were really good days. I visited with family, got a lot accomplished at home, did errands and bought some beautiful plants to start working outside as soon as I can. Next weekend we have two daughters graduating ..college and grad school!, Mother’s Day to celebrate and lots of family time. I’m determined this will be a good week and I will have plenty of energy to enjoy the weekend (by that I mean I plan to spend the next few days doing as little as possible so I can fully enjoy the festivities on the weekend).
Only 4 more treatments left. I had my favorite oncology nurse in the lab today. She took my port virginity so we have a special bond. Actually they are all pretty great. Except for that one redhead whom I have never seen again. She must have been filling in or was fired after
stabbing me in the chest accidentally sticking the needle in some part of my anatomy other than the large bullseye with all the scarring from previous needle sticks. Honestly, I can see how that could happen. If you were blind. After she offered to try again and I said “ oh hell no! Sorry, you need to get someone else, you only get one shot to kill me“. She brought in a supervisor who slipped the needle in effortlessly. Before she did she asked if the skin was still numb from the spray they use. I said “Not as numb as that one”. We all laughed uncomfortably and I made a mental note that it’s probably not a good idea to insult people whose job it is to stick large needles in your chest. I’m usually pretty good about keeping my internal running monologue to myself but sometimes my filter slips. And sometimes I only pretend it slips. That chemo brain has to come in handy for something.
Off to watch the voice and root for my girl, Juliette!
Everyone else is.
So, the ongoing saga of my wrist splints aka carpal tunnel versus neuropathy. The first night I wore them I had no numbness at all, the second night just a bit in my pinky. Thursday I had a bad day.. just felt like crap in general, spent most of the afternoon and evening on the couch, so by the time I went to bed my back was killing me, I wasn’t tired after dozing off and on all day and I tossed and turned for hours. Around 3 a.m. I woke up and my hands were completely numb. I couldn’t feel them at all. And I had to pee. I sat there in a panic flailing my left hand to get the blood circulating while ripping at the velcro straps of my right hand splint with my teeth. I finally managed to get them off and get the feeling back in my hands, went to the bathroom and then came back to bed and lay there panicking that the chemo would be discontinued now. I got myself all worked up . I thought I may as cancel the radiation too, have a bilateral mastectomy and be done with it. (Now mind you, at no point in time was I ever told I had to have chemo to save my life. It was more of an insurance against recurrence. I could have opted for just radiation after surgery. I have had 4 rounds of dose dense AC, and 7 of 12 rounds of Taxol. That’s a whole lot of chemo. But.. while I was initially more afraid of the chemo than the cancer, now I am afraid to stop.) All of these thoughts kept me awake and Friday I was dragging all day. I went to bed Friday night and while putting on my splints, realized I had worn them backwards the night before, essentially cutting off the circulation to my hands. Honestly, I should never be left alone with devices of any kind. I am happy to report that Friday and Saturday night I had no numbness at all. The splints do go flying in the wee hours when a hot flash hits and I can’t stand them, but they are working. When my oncologist asks how they are working out I will say “Fine” and leave it at that. If she wants to know what’s going on with me, she can read my blog. I want to continue the treatment if I can, but if she feels I’ve had enough that’s cool too. I’m all zen and shit about the whole thing now.
So apparently the numbness I am experiencing is concerning, even though it’s not the neuropathy we are warned about with Taxol and it’s cousins where the fingertips and bottom of the feet are numb. My oncologist said it was carpal tunnel but it is getting worse almost daily. I wake up to two completely numb hands and have to shake and flex them to get the blood circulating. I hadn’t put two and two together until she asked about my feet but I have noticed one or both will “fall asleep” when I’m watching television in the evening. I have had carpal tunnel in the past when I typed for 8-10 hours a day and it was painful. This is not. I was told I may not be able to complete the 12 rounds. I will wear these splints at night to prevent my nerves from compressing in the wrist causing numbness. If I still have it, then it’s the Taxol. Since I’ve had the complaint from week one and it’s been progressively getting worse she wants to stop so I don’t have permanent damage. I don’t want to stop. I have cancer. I was told I needed 16 rounds of chemo and I want 16 rounds. I know that sounds ridiculous, but I don’t want to be sitting in her office in 3 years and hear it’s back and we should have done more the first time. On the other hand I was told from the beginning I was likely getting too much chemo, but since there is no way to predict if the cancer will come back, mine is hormone receptive and I am relatively young and there was micro-metastasis in the sentinel node, we would throw everything at it.
She brought up my genetics appointment again too. It was moved back to June when I will be between chemo and radiation. I have mixed feelings about it. I need to do it, especially for my daughters, but I don’t want to open that can of worms just yet. I’m tired of thinking about cancer. I don’t want to be told I should have had a mastectomy after all and I did all this for nothing. I don’t want my 22 and 26 year old daughters to have to make decisions about their breasts and ovaries before they’ve had a family.
Otherwise, the appointment went well except for the unleashing of my paranoid obsessive disorder