welcome to the danger zone

Posts tagged “radiation

Just A Lot of Whining

It’s never a good sign when I go to start writing and can’t find my glasses. I mean, I can do this without them, that’s what the little magnifying glass is for, to make this shit bigger so I can see it. But I’ve been having a lot of anxiety lately and now, being unable to remember where I put my glasses is going to be added to that mess of thoughts that are rattling around in my skull.

Anyway, I’ve not been writing – not because I haven’t wanted to, because I have, but there was a 10 day stretch where I couldn’t sit up for extended periods which makes the whole typing thing a bit difficult. Like I said, I have had some serious anxiety, something I have never really had before in my life, not at this level. I know it’s related to the c-monster and the uncertainty that is part of this go round with this nonsense. I also know that writing would also help to purge some of it, and I haven’t been able to. I also realized today that I am also really angry this time, angry that I have to deal with this again, angry that I have to put my life on fucking hold because I live in a country that doesn’t believe in national health care. You see, when you have cancer, it’s not like having diabetes or high blood pressure, stuff that is serious, but manageable and affordable for the most part. If I lose my health insurance, I am fucked. I mean, I know that I can still get treatment, but not the best, and certainly not without the added stress of worrying about how to pay for it. So, even though I have FMLA, because there is no finite end of this in sight, I am constantly in fear that I will lose my job, and with it my health insurance which has thus far assured me that I will have quality care. And in my reading over the last few weeks, I’ve learned that while I cannot be denied insurance for a pre-existing medical condition, I can be denied coverage for treatment related to that condition. For example, I can still get health insurance, but they don’t have to pay for ongoing cancer treatments, as long as they cover everything else. This information adds to the anxiety. I am not going to belabor this, I just need to say that it makes me angry that human life is only valuable when it furthers a fucking political agenda. Adequate health and quality health care shouldn’t be something anyone has to worry about. But I live in America, where what you get is what you can afford. I shouldn’t have to worry about things like this, I should be able to focus on getting well but the reality is that I can’t just worry about my health, I have to worry about being able to keep health insurance so I can get treatment I need.

It all comes down to the fact that this time, the c-beast is still inside me. They can’t just cut it out and give me chemo to track down and kill any escapees. All the visualization in the world will not erase from my mind the fact that my whole life is on hold while I wait to see if heavy metal poisoning will stop these arrogant killer cells from multiplying, and hopefully they die off and leave me alone. And unless it vanishes, that shit will remain inside me, waiting, taunting me. I don’t believe I will live in fear, but it’s always going to be there, in the back of my mind. Every pain, every discharge, every weird wiggle or twitch in my body will have me wondering what is going on inside. I am angry about that. I am angry that I have to endure this again, that I have to spend 10 days in bed because I can’t sit up without wanting to hurl, and there’s nothing to hurl, because I’ve eaten so little that it’s all bile. And all of this leaves me scared; I can put on the happy face, I can make jokes, I can smile and laugh and pretend it’s all ok, but I am fucking scared to death that it won’t be, and then I feel guilty because I then thing my thoughts will create my reality and …WHAT THE FUCK IS WRONG WITH ME??? Maybe I remember that the last time I went through this I was much stronger and positive, but then maybe that was just the way memory works, maybe I felt the very same way.

So yeah, I don’t know if it’s the same for everyone who has cancer, but I lie in bed at night and wonder what I did to deserve this. Was it something I ate? Having the laptop on my lap? Being a fat cow? Negative thoughts? Thinking badly about others? Revenge? Consequences of bad decision making? Drug use? It’s just not fair. I want my life back, I want to just be the happy and carefree grasshopper that I used to be. And then I go downstairs and I see Andy lying on the couch asleep on a Saturday night and I feel like it’s all my fault he’s there because his paycheck goes to making sure we have food and electricity instead of alcohol and clubs like it should be for a 23 year old. The last place I was on a Saturday night when I was 23 was asleep on the couch, unless it was because I didn’t get home until early afternoon. And even then I was probably going to spend some money on some substance that would keep me up for another 24 hours. I accept that my teeth are shit for those poor choices, but that should be enough punishment. The poor kid works overtime almost every day. He shouldn’t be here taking care of his mother, it is my job to take care of him. It’s wrong.

I swore I wasn’t going to whine about cancer incessantly when I started writing this but it’s hard not to when your whole day revolves around whether or not you are sick or going to blood tests or appointments or wondering how bills get paid and how to keep your health insurance. I sometimes wonder if I sleep so much because I am sick, or because I don’t want to have to think. (I know it’s because I am sick, but I can’t help wondering). I’m scared and I’m angry and I am worried. I wish I could break down and cry but my stomach ties up in knots and my chest gets tight and I toss and turn and wish I could just forget for a while what day it is in my treatment cycle and forget when I have to go back. I’m 2/3 done with this series of treatments, and my numbers look good, but at my last doctor’s appointment, Dr. K pointed out that while my numbers look good, they aren’t where he wants them to be at this point, so he subtly hinted that six cycles may not be the end of my treatment. And so, the end I was keeping in sight, is no longer so clearly defined. And sure, I know many of you are thinking but he didn’t say you have to have more treatment, and be positive, and stay focused and blah blah blah. Easy to say when the tumor is not inside of you, and trust me, I remind myself of all of those things a million times a day, while I count the hours until the next CA125 test to see where that fucking number is, knowing that even if it’s improved, it’s not a guarantee. Everything is so much more complicated this time, and as a result, my mind is constantly picking apart every twinge and tickle.

And since I can’t literally kick the shit out of the monster inside me, I let other things frustrate me, and then I hate myself for that, because I am not that person. I want to be Polly-fucking-sunshine and I can’t be, even though I constantly try. And lets not even talk about disaster house, my prison during my sick days. I spent two hours today trying to do some organizing and hardly made a dent. I ask Andy to do stuff, but let’s be realistic, the kid works 12 hr days for 5 days a week, and I am not gonna wake him up to ask him to clean the bathroom or do dishes. My friends offer to come help, but I am too ashamed to let anyone in to see the disaster this house has become, and I can’t do anything myself. I feel pleased making my bed and hanging my clothes on hangers. I vacuumed 9 steps the other day, and was too tired to finish, which then made me angry that I can’t fucking do anything. I would wish the house would burn down, and let me start fresh, but that would affect my neighbors and that just wouldn’t be fair.

So yeah, I’m pretty frustrated. It will pass eventually, I’ll get to a better place but in the meantime, I’m in this dark place trying to stay all sunny and hopeful. What I really planned to do when I started to write was to write about the amazing kids my son went to school with at Milton Hershey School (go ahead, click and visit them, this will be here when you get back) and how they started to raise money for me to get my own car so I don’t have to rely on Andy all the time because right now we have one car, and Andy has to drive me places and pick me up, after he works all night. I can drive myself, but when he’s not here and has the car, I’m stuck because I can’t really walk anywhere for anything. It’s on gofundme – it’s amazing to see what some of these young adults donated – crazy – for me, and their messages – it touched me beyond belief. I only found out by accident, and Andy had no idea either. More than the money is that these amazing kids wanted to do this for me, and help Andy and I. But maybe even more touching was the lady at the pharmacy the other day when we were coming back from Hershey. I went in to pick up my “auto refill” pills, which were only partially refilled, so I had to wait. This older woman came in, she was 75, and her refill was also “auto refilled” which meant she had to wait too. We started talking, as my bald head kinda clued her in to my cancer, and she told me how she had a quadruple bypass and then had clots in her lungs and died three times on the operating table. (For the record, she also told me there was no light, and none of that nonsense all those people who died claimed to see) She was a very religious lady, and kept telling me she was testifying. When they called her for her prescription, we ended up hugging each other. As she was leaving, she shoved five dollars into my hand and insisted I take it, and we wished each other well. I was moved by how much a stranger cared about me, and how you can make a connection in the most unlikely of places, on a day when I felt like walking death, and all I wanted was to get home and get back into bed. Of course, I realized that had they not screwed up both of our prescriptions, our paths would never have crossed. Still, it doesn’t mean I am not changing pharmacies, because I am tired of their mess ups. Anyway, it was serendipitous moment that made my day.

Well I think I pretty much got a lot of my ire out in this post. Wasn’t the funniest or most reflective one I ever wrote, and totally not what I was planning in my head, but it’s good enough for me. I’m gonna try and get some sleep, since I want to try to get a few things done tomorrow. At least get a load of laundry or two washed, so that’s it for now lovelies. Be well and enjoy the start of spring. I’m gonna go spend a few hours chanting and hope it lulls me to sleep. Sleep tight.

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Don’t Mess with the Zofran

Hector, the Vulture.

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.

Ashley, my private RN, chemo buddy, NBFF, and sharksister…she only looks friendly..LOL

Hector, the Vulture.

Hector, my cancer companion Vulture! He guards me during treatement.

Taxol. Poison.

The Bell!!