I feel terrible. Honestly, I hurt all over, the heat is not making it better, and I am bloated like a beached blue whale. Maybe a humpback. Or a grey. Definitely not a beluga. I’m alternating percocet and zofran to keep me painless and puke free. I thought I’d be used to this by now, but apparently, it is getting progressively worse. I am only thankful that I have just one more treatment after this. One or two more weeks of hell after June 4th, and then this is over. I can start to get well again. I’m looking forward to that, with a passion that you, my sweet friends, have no idea.
I am so tired. I mean tired that yesterday I went out twice…once for ½ hr to the Kielbasa Fest, and then went to the mall with Lisa for another ½ hour. I needed hand sanitizer from Bath and Body Works. Even just thinking of these outings is wiping me out. I want to hit the bed, but if I jump back in, I’m there for the rest of the day and I really want to blog because it’s my weekly brain dump. I get to pour out all my jumbled thoughts and then move on. And this week there’s been a few that keep haunting me.
First one: What if the cancer comes back?
Right, right, right, positive thinking…I know. I can do this most of the time, but until you are in this position, you have no clue how hard it is to keep focused on the idea that this is a one time deal and in another 3 weeks, the ordeal is over and I’m well again. I know it is real and possible that this was just one brush with the c monster, and that worry has never prevented anything from happening. But I can’t help thinking that what if it’s not? I’ve made it through it fairly unscathed and feeling pretty well comparatively speaking, but I don’t want to have to do it all again. I look at every mole now thinking it is skin cancer, I fear the mammogram and colonoscopy I need to have because what if they reveal something; what if there’s some stupid ass cancer cell floating around in my body that the chemo didn’t wipe out and it takes root somewhere. No matter how hard I try to put this thought out of my head, the reality is that it isn’t going to go away. I am always going have this fucking cancer spectre haunting me, and even when I sleep the narcosleep, it’s never quite gone.
And fair warning to those who don’t want jarring mental images from this next bit…I’m giving you a heads up it may cause you nightmares, but since this is my fucking blog and my personal neuroses, I get to write about whatever I want, because it’s my therapy.
What about sex?
I know the Dr. told me it might be uncomfortable initially but there’s no reason I can’t have a normal sex life. What is normal? I haven’t had sex in at least 12 years. That’s right, you read it here first…no sex in over a decade. I was okay with that. But now I’m afraid. I’m missing a lot of parts. Will things feel the same? I mean it’s not like it is a pressing issue…I’m not even attracted to any one right now besides Johnny Depp, Ryan Hurst and Eric Balfour, and it is unlikely that any of them are going to be asking me on a date anytime soon. No urgency. But what if? Plus I’m a bit uncomfortable in my skin these days, between the flabby fattiness and the battlefield of scars, and the other physical changes, I am also very scared that I will be alone the rest of my life. But that’s another journal entry, or not. You don’t realize the impact that being gutted of your girl parts has on your identity as a woman, until you don’t have them any more. I have been so focused on getting through this, I haven’t had the time to really mourn the loss of those things, that for me, made me a woman (despite the reality that they had probably atrophied from lack of use anyway) AND let’s not forget this menopause business. It’s sneaking it in here and there, with all the other fun side effects, so I get the delightful hot flashes, or at least that is what I think they are, every now and then, when I think I am finally getting to enjoy a moment of feeling normal.
So here’s the secret, my sweetlings:
I AM NOT ALWAYS POSITIVE. Sometimes I am downright sunk into despair. Fortunately, I don’t allow myself a lot of time in the tar pit of gloom, because I’ve been stuck in there too often, and I know the consequences of being mired in the pool of sucking darkness for too long. Therefore I slap the smile back on my face, visualize dark and funny things, and then get on with life. And I need to thank those of you who have stopped me and told me that I inspire you, those of you who have sent me messages, or posted on my facebook or twitter, and have said that I help YOU be more positive, because that really humbles me. I didn’t set out to do it, but I am glad that I have, and on days like today, when all I really want to do is take some more percocet and cuddle into my pillow and sleep away another day, it reminds me that not only has cancer taught me some super valuable lessons, but it gave me a way to help other people too – make them laugh, or smile, or just think. So thank you to you my gentle readers.
Now, I’ve purged a lot of the negativity I’ve been feeling today. I’m ready to move on to lighter topics.
First, why is there no “Make A Wish” foundation for adults? Seriously, I understand the importance of this for children, but hey, I’d like to go to disneyland too. And the fact is, that while childhood cancer is a horrible thing, and children deserve to have joy while going through these painful treatments, so do I!
Even moreso I believe, since children are cared for by parents and family, and someone is caring for them all the time, and people do wonderful things for them because they are in pain and being deprived of a typical childhood, and I am not. Children with cancer have parents who will make sure they get to treatments, who will hold them and comfort them, who will make sure the bills are paid, and that they are comfortable, and that there is a roof over their heads, and try in general to make life better for them. Adults with cancer have to worry about bills, rent/mortgage, food, keeping the house clean, doing laundry, health insurance, caring for their families, car repairs, gas, oil, making sure they still have jobs, and in cases where things are terminal, funeral plans, etc. etc. Adults with cancer have to deal with so much more, because they are adults and have adult responsibility. I’d like to have breakfast with Mickey and Tigger too you know. But NO CLOWNS. CLOWNS CREEP ME OUT. I’d like to have a few wishes granted, like an ipad or even a cheap laptop that doesn’t fight me every day, or my wildest dream, a car that doesn’t increase my stress level by a 1000% every time I have to drive it to Hershey. In fact, my wishes are really quite simple, comparatively. I’d settle for a weekend at the ocean, say New England, in a tiny room with a big bathtub, and an ocean view. I’d bring my own food even. Hell, I’d settle for a night in a hotel that doesn’t have bedbugs and has an indoor pool and hot tub. Actually, I’d settle for finding a pool where I could swim everyday, because water heals me. I’d even settle for a damn foot rub.
Secondly, why is my bald head so unsettling? My head is very very beautiful. It’s nicely domed, it keeps me cool (seriously, it is amazingly comfortable) but people do one of two things when they see me – they either stare like they’ve never seen a woman with a bald head before, or they can’t look at me at all. My friends and coworkers are all fine with it, but the general public is far more comfortable with women in clothes that barely cover their breasts and bum than they are with my naked head. I don’t quite understand it.
Well, I paused for a brief nap while typing this…falling asleep suddenly is one of my new tricks. As is random bruising. And a serious loss of salty tastes. That’s troubling, but I am hoping temporary… I never put salt on things before I had cancer, now I’m salting all kinds of stuff…even chips aren’t salty enough. The last two days have been all about the Zofran (the anti-puking drug) and Percocet (the anti-whimpering drug). I’ve got nausea coming at the most bizarre times. At least there’s no weird smells this time. Just when I think I am used to this new chemo, I get a whole new set of side effects. Itchy feet. Mouth dryness. I hate the bloating the most, it’s second only to constipation. I’d rather spend the whole day in the bathroom with explosive poopies than be constipated. This has all been very curious. And perhaps most distressing of all, I’m not losing a ridiculous amount of weight at all. You’d think there’d at least be that perk. But NOOOOOO, I’m just as plump as I was after surgery. I gain ten pounds of bloat from the steroids right after chemo; by Friday I am down ten, and right back to were I was before chemo. No bikini body at all. And I drink tons of water. Weight gain is not a typical side effect, but can happen. And of course, as with all things that are not common but can happen, it happens to me. BUT…there is only one more treatment, and I can deal with this. Right? Right? Of course.
As always, chemo brain has caused me to forget half of what I was planning to write about when I began this entry. One thing I wanted to ask is that you share this blog with one of your friends and ask them to subscribe. I want to get to 50 subscribers, you know, since I’m not going to Disneyland or getting a foot rub. And ask them to share it if they like it. Because you never know what I will reveal in my blog…like for instance, do you know they have creamsicle flavored Oreos now? Like a little bit of heaven in cookie form. Delicious. Fabulous. Amazing. I am going to stockpile them, and when I am feeling healthy again, I am going to coat them in white chocolate and sprinkle them with orange sanding sugar and enjoy them with a latte.
I also haven’t forgotten that I must reveal to you my secret project. I am still working on it. It probably won’t be done until after I finish chemo, but you will be delighted. And, if I haven’t asked you personally, there is this bell ringing ceremony after I finish chemo which will be June 4th, at sometime between 1 and 2, depending if I start on time or not – you are invited to join me at the Cancer Institute in Hershey. It only lasts a few minutes. I am still trying to figure out the details for a cancer is over party this summer, so you can also join me at that once I figure it out. It will involve alcohol. At least for me.
But alas, the chemo has sucked all my thoughts away again, so I will leave you with this paraphrased quote I read on FB this morning… “no matter the weather, always bring your own sunshine” . (note to Debbie, Kelly BFF, and sharksister Ashley, I know, I know, it’s perky and totally out of character…I personally would be bringing my own cold fog and thunderstorm, but it doesn’t make a good closing quote). I am including some pics with this post from chemo, including my sharkey friend Ashley, who has spent the last three chemo sessions keeping me company and making me laugh, and who will unfortunately be on the west coast when I get to ring the bell. But at least she will be in a teepee. Which is better than having poison dripping into your arm. And there will be video.
Oh yeah, and stay tuned for the c-monster playlist. It’s next.