Then There Was Cancer (Maybe)

In December I had an abnormal PAP smear. I didn’t stress. There had been talk of HPV a six months prior, and while my doctor at the time of the HPV drama had been a bit of a pain, he had stated that the type I appeared to have was very low risk. It didn’t cause cancer, and it wasn’t something most people even had symptoms of. I had an impaired immune system, so I had symptoms, but eventually I’d clear the infection, and be totally fine. At least that’s what he said. I opted to see an OBGYN before starting Lupron during chemotherapy, and that’s when I’d had the abnormal PAP.

Initially I worried. They wanted me to come in for a colposcopy, but I couldn’t drive, and was seriously ill from the chemo. My new doctor assured me that I could wait for the colposcopy. It took a long time for cells to change, and the external lesion that I’d noted didn’t even appear to be HPV. She told me it was likely a skin tag, or a result of my Behcet’s. I went through my chemotherapy without really thinking much about the abnormal PAP smear. What where the actual chances that I’d have all of these things going wrong at once?

On Friday I went in and had my colposcopy. I was nervous about the pain, but otherwise okay. What were the chances? They had a screen where you could watch the procedure, and so I watched…until I realized that something was wrong. Very wrong.

I stared at the screen. I wasn’t exactly sure what a cervix should look like, but I knew that there was something seriously wrong with mine. The edge was bleeding, which the doctor said wasn’t totally uncommon, but the rest of it looked foreign to me. A large white mass covered the majority of the surface, breaking the line of skin cells that mapped out the edges of the cervical surface. The doctor informed me that they’d need to do a biopsy. She turned off the screen saying that it wasn’t fun to watch yourself be cut.

A medical student held my hand, and the biopsy was quickly taken. It didn’t hurt as badly as I thought it would, but my head was swimming. The doctor told me to be prepared for the call, that the changes were moderate to severe, and more towards severe. We talked about HPV and cervical changes, and I asked if I had any options. She said that did, but that we needed to talk once the biopsy results were in.

I haven’t gotten them yet, but I’ve talked to friends who were in similar situations. Cervical cancer is this odd taboo subject. There are odd staging levels. Even if you’re in the very early stages, it’s still cancer, but it’s approached as though it isn’t. They’ll just shave off some of your cervix, or cut out some of your cervix. My friend has miscarried, once in her second trimester, due to issues with her cervix from the procedures she had to undergo. Other women have the “cancer in situ” treated via these removals, but still end up having to go through hysterectomies, because it returns.

I’ve fought through six months of chemo. I’ve accepted limitations based on odd occurrences with my autonomic nervous system. I’ve told myself that I will still find love and start a family someday, even though I’m embroiled in a long and bitter divorce. I push and push, and then the unimaginable comes form left field. Nobody was sure if I had HPV or not. They were all fairly sure I didn’t, or if I did, that it wasn’t a strain that caused cancer. Now? Well, barring a miracle that shows it’s some odd lesion related to Behcet’s, I’m facing cervical cancer. Now I have to grasp at the hope that it’s early in the cancer game, and limited to an area that can be treated without impacting my fertility.

Of course the doctor told me point blank that I am, and always will be, a high risk case. I have to see a high risk OBGYN before becoming pregnant, plan carefully, and be followed closely. People think my depression or anger over my divorce is somehow related to jealousy, jealousy that he’s living with his girlfriend, and that they have a baby. I am jealous, but not just of him. It’s this overwhelming jealous anger at the universe, because people around me have solid careers, homes, families, etc. They’ve happily fallen into the life I’ve always imagined, while I struggle to just hang on to the bits and pieces of what I’ve managed to assemble for myself.

I want to be loved, and be in love. I want to have a family. I want to have a career that enjoy. I know that life isn’t that simple, and that nothing is as perfect as it seems, but when you’ve fought as hard as I’ve fought, just to have life kick you when you’re just starting to get up…it’s hard. I feel like the wind has been knocked out of me. I’m waiting for the call, and dreading it, all at the same time. Bills have mounted, and yet I can’t even try to find some work from home work, because if I even work just a little bit, on record, my disability could be denied. I have backpay that I’m owed, that I need, because my credit card debt is brutal.

There has to be something more than this. There has to be something better. I’m so sick of finding out that the light at the end of the tunnel is really just an oncoming train.

Then There Was Cancer (Maybe)

Hello Remission!

On Monday, April 17th, I had my sixth and final round of Cytoxan. It almost didn’t happen.

When I went in, they did the standard laboratory work, and I was a little worried that my counts would be off. I’d been feeling rundown prior to the infusion, which wasn’t usually the case. Sure enough, the nurses returned and informed me that my potassium levels were low. This was a big concern for me because during one round of chemo, I’d had low potassium and calcium levels, which led to a massive seizure, and a night in the hospital. It should be noted that I despise bananas. My doctor cleared me for the infusion, but ordered two potassium pills to be taken prior to the infusion. She was coming in anyhow that day to discuss plans for future treatment.

So, potassium down the hatch, and then I did something idiotic…I ate during my infusion.

I don’t get nauseas during the infusion, or after, because of the glorious medications I receive. I do, however, develop an aversion to whatever I’m eating during the infusion (or drinking). This has caused me disgust at peppermint after the first round, and a lingering desire to only eat sweets after eating chips during that first round, too. Long story short…I’ve developed a sweet tooth. I stupidly ate Sour Patch Kids, which I have grown to love despite previously hating them…and my “friend” had recently purchased Swedish Fish scented vape juice just a day before. I thought it smelled wonderful.

Now? Nope.

This past week I felt like death rolled over and wrapped in horse manure. I’m staying with my “friend,” and I don’t really remember much from the first few days. I knew my potassium was still low because of the muscle twitching and pain, but I was too queasy to give a shit. I stuffed my face with potatoes even though I really didn’t want them, and then gagged whenever my “friend” would use his vape. Even now, with the nausea nearly gone, the scent of that Swedish Fish vape oil, is just too much.

Remission? My doctor seems to think so, though I guess it’s important to note that I will always have Behcet’s. I have this urge to go out, find a job, do everything a healthy person would do, but I just can’t. I’ve even pushed myself too fast already, with walks, and the dog park, and payed via sheer exhaustion, and dizzy spells. I will be taking Cell Cept, which is still a pretty strong immune suppressing drug. I’d thought remission would mean no more drugs, but apparently that isn’t quite how this thing works. I think a part of knew there would be maintenance medications, but you always want to hope that you can be “normal,” whatever that is…

My neurological issues are a whole different situation. I still have and seizures, issues with heat, muscle weakness, and tremors. My heart rate and blood pressure make no sense what so ever…which is why my neurologist is confident about his diagnosis of autonomic neuropathy. It was a blow to be told I had a form of dysautonomia, especially since diagnosis of autonomic neuropathy is based a lot on symptoms, instead of laboratory analysis.

When you’ve spent your entire adult life, and much of your childhood, searching for answers, you expect the answers to have some tangible legitimacy to them.

Of course, my heart rate fluctuations alone have given doctors pause for quite some time. In the hospital they thought the machinery was malfunctioning, because my heart rate would drop into the mid-thirties while I was asleep, and them soar to 160 when I sat up. Welcome to dysautonomia, can I take your order? 

The reality is that many Behcet’s patients suffer from some form of dysautonomia, though from what I’ve read there doesn’t appear to be a clear reason for why this happens. There aren’t a ton of us Behcet’s patients, which makes it hard to study comorbidity scenarios…but still.

Where does this leave me? I will likely have to take seizure control medications my entire life. This means I will also require antidepressants, since I have issues with depression because of the high dose anticonvulsants. If I can keep my Behcet’s in remission, I can hopefully wean off of the nausea medications, and have more of an ability to tolerate medications by mouth. I’ve already put on 40 pounds, and would love to drop some of that weight. It is hard to see my body change so drastically, but I’m grateful that I am capable of digestion again. That being said, I will also still deal with motility issues because of the dysautonomia, and because of my limited diet and hunger during my serious Behcet’s issues. I haven’t had any issues with my balance and coordination, though I do still have hyperactive reflexes. This, I’ve been told, is related to the autonomic neuropathy, which I’ll be investigating with my neurologist over the next several months. I’m also a new and proud supporter of medical marijuana. It has saved me more times than I can count in the last few months, and particularly during this last round of chemo. Without it, I’m not sure I’d have lasted the full six months.

My divorce still isn’t finalized, because my ex is controlling. It bothers me that we’re still legally married, and that I have my married name. It doesn’t bother me that he’s trying to keep control by dragging out the divorce. I am happy, and focused on my life, and he’s not able to hurt me any longer.

His words still echo in my mind though, that nobody will ever love a sick girl like me. What if that’s true? What if I’m destined to be alone like my father? Sure, he has friends, and I’m sure he dates, but he won’t open up to anyone, largely because of his illness. He’s told me that he’s better off alone, since he’s sick, and that could be a burden. I don’t think he realized I was listening when he said it to me, and he definitely didn’t know that I would one day develop my own serious health issues.

I’m in this odd place. I know what I want in terms of a career and a family, but I don’t know how to get there. How can I have children with my health the way it is? Who would want to have children with me? Will anyone love me enough to see past my health issues? What if my dream career isn’t fully possible with my health limitations?

You know you can adapt so much of the world to fit your abilities, but you also hesitate to ask for help with adaptation, because you want to be seen as equal to those around you. I want to be loved for who I am. I want to be seen as a human being first and foremost. I know that my disabilities are a part of who I am, but I don’t want that to be the first thing others notice about me.

There are times when I know I would need a wheelchair to do certain things I’d love to do. Take walking around Comic Con festivities. I know that the heat will break me down. I know that I would be spent by the time I walked from my apartment to the waterfront. If I had a wheelchair, I could take the stress out of the mix, assuming I had the strength to propel myself in the chair (or if I had a power chair). Still, who is going to look at me, in a wheelchair, and think, “That right there is girlfriend material!”

Sometimes I let myself wonder if my “friend” could be more, but then I take a step back, and evaluate the situation. He’s an amazing guy, with drive, and ambition. He’s attractive, kind, and comes from a good family. There is probably a reason I’ve been thoroughly friend-zoned, and it’s more than him not knowing what he wants. We all question where we’re going in life. but if we see someone who feels like they fit into the equation, we know. I don’t fit, and it’s taken me a while to accept that. So while this is fun, and a big part of me wants it to go somewhere, I’ve accepted the reality that it won’t. Guys like him don’t settle for girls like me, and no, that isn’t depression or anxiety talking. Like I said, I’ve made my peace with it.

I do want to be loved though. As much as love terrifies me, I want it. So I guess I’ll just keep fighting my illnesses, and celebrating the victories. As soon as I move into my new apartment, I’m having a post-chemo celebration. I want to have a major victory dance over the end of this chapter of my life. Eventually I’m going to head to Vegas to see one of my favorite DJ groups perform.

I’m going to live life.

Hello Remission!

Cytoxan Round #3

Ugh. Ouch. Gurgle. Noooo.

That about sums it up. The process went really well, I only had to get stuck twice, but they did increase the dose. I was pleased to have manageable side effects during, but immediately afterwards I felt gross. I had a fever of 101, which I usually am around 97.3 (which was where I was before the infusion.) I knew I had inflammation issues, but they gave me steroids so I thought I’d feel better. Nope. My bones hurt. Yeah, my joints hurt, but literally, the BONES in and around all of my joints are just horribly aching. I’m dizzy. Now, several hours later, I’m definitely a little nauseas. Thankfully I ate when I cam home, so if I can keep it down, I won’t ruin the foods for myself forever.

I’d rather have pain, than nausea, so I am grateful in a sense, I just hadn’t thought I’d have the choice to trade…or that the trade would be so debilitating. It feels like my joints are falling apart, and the bones are just shattering to bits. That’s it, in a nutshell.

My pre-dose drugs are a bit different than the average bear, as are my during and post-dose drugs, but that’s because my intestines suck, and I can’t stay hydrated to LITERALLY save my life. I get 500mL before, then 1L during the infusion (they piggy back the meds with the fluids. before I get the Cytoxan I get Zofran for nausea, and Decadron (the steroid). I’ve been told varying things about why I get the steroids, but ultimately they help me with inflammation, and because I do have extensive drug allergies, putting that in my system is kind of a “better safe than sorry,” thing.

The one drug I get that other people don’t usually get in a pre-dose, is Ativan. Listen, I try to be tough, but chemotherapy scares the living crap out of me. I don’t enjoy any aspect of it. The first dose made me feel dizzy and nauseas pretty rapidly, and during the infusion no less, so I was sort of done after that. I’d gotten Ativan for my muscles to stop twitching (disease side effect) and it worked, so then they opted to keep it in my regimen for anxiety. They also added promethazine at the end of my infusion, so I could have that in my bloodstream for my short ride home. Hey, anything that allows me to drink more fluids, is a win.

This particular drug combination makes me sleepy. This is ideal. I want to sleep. I don’t want to think about what the drug is doing in my body, what I’m missing by going through this process in terms of school, a social life, and just being who I want tone, and I definitely, DEFINITELY, don’t want to feel any of the horrible side effects I tend to have with these meds.

Which brings me to a realization I just literally made with the last statement…side effects. Steroids tend to cause deep bone  pain for me. Some more than others, but it is an issue. Hopefully this will fade instead of worsen, though I have had intermittent bone pain 10-14 days after each infusion, so we’ll see.

I wasn’t a pansy, and went by myself for once. Well, I did try and pansy out and find someone to come, or pick me up, but it was for the best for me to face this alone. I need to rely on myself, while still learning to ask for help when I genuinely needed it. Sure I was afraid, and I wanted someone to hold my hand, or distract me, but I did take a nap. At the end of the day, it wasn’t a dire situation, and I have enough of those that I face alone as it is, so it makes sense to try and evaluate the actual need.

Depression and anxiety are still a thing. A major thing. I wish I could say that I had more good days than bad days, but I’m like a functional alcoholic at this point. I am profoundly unhappy, not nobody who knows me would guess that I’m a negative Nancy. To the people around me, I’m the positive girl. I’m handling my situation wit patience and grace. Above all, I take it day by day and smile.

Gag me.

Okay, maybe it isn’t that extreme, but let’s be honest for just a little while: nobody who is chronically ill, is also a diehard optimist who pisses rainbows all day everyday. It’s not physically or mentally possible. There is a difference between appearing positive, and actually buying into the things you’re saying. I fake it a lot, and a lot of the times I’ll end up in a better mood having faked my way into one…but other times I get even more depressed. I see the version of me people seem to love, and I die a little inside because that girl isn’t me.

Sometimes I cry on the floor in a ball. I scream at lab reports, and books about Behcet’s. I stare in the mirror and struggle to recognize the balding, often bloated, version of me that stares back. I get anxious about going out more than ever. It used to be a fear of vomit, and getting groped or drugged. Now it’s just wondering if my wig is going to fall off, or if I should be wearing a mask because of the germs. At least my fears regarding gropers and drink drugging have taken a hiatus. Nobody wants to touch and/or drug the bald chemo chick.

This is why I get asked a bunch of questions before my infusions. I get to talk about pooping with several nurses. Then I get to talk about my weird bruising. Then we chat about my battles with neuropathy. Then it’s the mental health assessment. Yes I take medication for depression…the anxiety situation is another story. technically my antidepressant should work on both. Hahahahaha, have the drug companies tested it on someone with my particular life configuration?

That’s the point though! My life is absurd. It’s absolutely mad. If I weren’t anxious and depressed, I would be certifiably insane, and worthy of institutionalization. 

My reality is painful. I don’t feel as though I will ever be truly loved, I don’t feel like anyone will want to live with me, share a life with me, and I’m not talking marriage, though I’m open to the idea if I found someone who wanted that…I just don’t personally think marriage is what should define a relationship. How two people treat one another is really what defines them as a couple. That aside, I can’t find myself being loved, being lovable. Sure, I’m kind. I’m not a bad person, but I have issues with depression, anxiety, and worst of all Behcet’s. I feel like the only kind of man who would “love” me, would be the caliber of man that my ex was. My ex is not capable of love. He lacks empathy. He can mimic emotions having seen them, but he doesn’t feel guilt or remorse like a normal person does. I won’t ever live that way again, ever, but that decision makes me feel like I will always be alone. Like women like me have to settle for poor quality men, simply because the good guys won’t settle for broken women like me.

It’s all deeply rooted in childhood nonsense, an I can reread it and realize how absurd I sound, but anxiety and depression don’t work off of logic. I’m anxious about living alone forever because I like to cook and clean and have someone to be there for, and have someone who is there for me. I also realize space is a blessing, and have always valued my own alone time, and the alone time of others. I am a good person, but I’m not good to myself. I know this. Changing it is the struggle. Trying to sort out wants and needs, all while feeling like you’re simply not lovable. It’s a horrible feeling.

“Nobody will ever love a sick girl like you.” The last thing my ex ever said to me in person. It replays a lot, but it’s not always his voice. It’s the voice of friends who have left me. It’s the voice of family members who judge my decision to slow down my graduate school coursework. It’s the voice in my head, my own voice, when I see couples holding hands and walking. It’s the voice of my depression, latching onto every ounce of venom in those words, words he knew would break me. He said it to crush me, for leaving him, but I kept walking. I didn’t humor him, give into the fight, and postpone my drive. He would have loved feeling like he won. Instead I just kept walking. I told myself that I wouldn’t believe, and I still hope that maybe someday  I won’t. Right now? It still feels pretty real, and it’s cold, hard, and hollow.

Cytoxan Round #3

Seiz(ure) The Day

I was supposed to go see a band play tonight, but now I’m pretty sure it isn’t happening. There is a point where the stresses of life become aggravating. What I want, isn’t what I have, and I struggle desperately to reign in my expectations. I don’t know if my roommate will want to renew our lease in March, and the whole situation has me pretty anxious. It would be easier not to move, but I’d be okay with moving…if I had an affordable place to go. The truth is that I love living downtown, for a variety of reasons, but the cost is problematic. I sold my car in a hurry, but didn’t get nearly what it was worth…only to have my ex decide he would keep paying me the money I rely on for rent.

My whole life I’ve pushed for independence, and now when I actually need to be independent, my body has given up. I know that I need to relax. I know that I need to sleep. I know that I need to listen to my body and let the chemotherapy do it’s thing. Knowing things doesn’t make acting appropriately any easier, though.

Things with my ex reached a boiling point last month, and while he has assured me he’ll be civil, I’ve been fighting the military to try and have something formally put into place. Unfortunately for me, they don’t want to get involved. It isn’t a civilian issue anymore, because he has pushed me into a flare with his nonsense. Still, they insist I need to run around to about half a dozen different locations to fight for access to the funds that I’m entitled to. It’s a joke. The military clearly states a bunch of things regarding separation and payment for spousal support, but then they go and enable the service member’s intentional lack of support. It’s absolutely disgusting.

Let’s be clear, too. I don’t care that my ex has a girlfriend, or that they’re supposedly having a baby. What I care about is the basic fact that he is paid more for being married to me, and that the military states he is required to support me despite the fact we are no longer together. I do take offense to the fact that this girl is living in what was our house, solely because I’ve been forced to stress over housing, enormously, while she moves in and acts entitled to things that are literally mine. I’m talking household items I was given as gifts or purchased for myself, that this girl is using as though she’s been with my ex for years.

I stress despite the reality that my debt is less than what most of society has. It stresses me out because I work hard to be debt free, for years, only to find myself accruing debt once I left my abusive marriage. Things I had to purchase because my ex refused to send me anything? I didn’t have the funds for those items. Add in medical catastrophes, and yo get my current predicament.

Last night I wanted to hang out with “the guy,” but I wasn’t feeling phenomenal. It sucked because I felt fine, ate, then felt sick, then felt fine, then as I left for his house, it was like my stomach went completely haywire. I didn’t dwell on the situation because I knew that I had eaten a big meal. Still things felt really off. We went to bed late, but I couldn’t fall asleep. My body felt weird, and my stomach felt off. Looking back I recognize the signs of a seizure coming on, but at the time I didn’t think about it. I haven’t had a full blown seizure in months, so I legitimately thought my stomach was acting up. I remember going to the bathroom, thinking I was going to throw up, feeling like I needed to lay down on the cold floor, and then nothing. There is a block of time I’m missing, about an hour and a half or so, and the rest of how I got back to bed etc., is fuzzy.

Nobody knows why I have seizures. For a while they thought it was psychological, but then I started having them while on various monitors, and they realized there were serious issues with my breathing and heart rate during and after. Codes have been called, drugs have been given, but I don’t remember any of it. I can remember the weird stomach feeling before, and sort of after if I’ve been medicated, but if I don’t get medication, I really do lose chunks of time.

I definitely had a seizure, and it upsets me for various reasons. The first is that I sleep better at the guy’s place, than my own. I honestly was looking forward to some good sleep given that I didn’t sleep while the night before. Hindsight? Not enough sleep and not enough water = seizure activity. I went to his place dehydrated and fatigued, and stayed up without water, just adding to my problems. The second reason I am upset is that I like spending time with him. He calms me. There is just something about him that brings me from an anxiety ridden state, to a calm one. I still worry about things like where I’ll live in a couple of months, but as long as I have him around me, I don’t dwell on it.

Then there is the reality of the things I miss out on because of my health problems. Tonight I should be seeing a band with my friend, but I won’t be. I could have gone last night, but I didn’t, and maybe it’s for the best. Still, I want to be the person I was before. I was exhausted, sure, but I was working and going to school. Now I can barely function for school, and that’s doing it all from home! Forget work.

There is this thought that socializing is this extra thing we do after we’ve done the things we have to do, but when you’re sick, socializing takes on an extra meaning. Things are taking from me one by one, and I clung to socialization, even though I’m introverted, because it was the last thing I could do to feel normal. Now that is falling apart, and I feel raw and exposed. Looking for another apartment, it’s so painfully obvious. I don’t have a job. I’m relying on disability, but I haven’t gotten my permanent disability sorted out yet. I struggle but the struggling gets me no where. I tell myself if I get that sorted out, then I don’t have to worry about housing, but that would only qualify me for low income housing. Here the low income housing options are sort of terrifying.

What I want has fallen away. I know I have to focus on needs before wants. That sucks. I’m almost 31, and I want to live the life I want to live. I want to go to school, and finish my licensure. I want to have my license, and a car. I want some semblance of normalcy.

My ex wasn’t right for me, who he was is someone who shouldn’t be with anyone. That being said, I would like to live with someone who enjoyed having me cook and clean. I miss it. Not him, and not our home, but the idea of a home. It’s silly to some, but if you knew me you’d understand. I was genuinely ready for marriage when I got married, despite how young I was. I’m still ready for that structure, living with someone, taking care of someone, but I’ve had to let it go. Who would want to live with me?

I know my ex was abusive, but I can’t stop pouring over those final words he said to me. He told me that nobody would ever love a sick girl like me. I know that they were words spoken to hurt me, and that I shouldn’t take them to heart, but they fester in my mind. I keep thinking about them at times like this, when I’m not the person I want to be, when I’m not doing the things I want to do. What if nobody ever loves me? What if my health is what it is, and I’m destined to be alone because of it? I have so much to give, but I also realize that my health is a horrible drain on the people around me. Even if I don’t ask for help, it’s obvious that I don’t feel well.

Just breathe, I guess. In and out…and hope that maybe it will all make sense.

Seiz(ure) The Day

Depression Depression Anxiety

It’s like a really miserable game of “duck duck goose” in my head right now. I can’t figure out if the depression is making me anxious, or if the anxiety is making me depressed, but it’s probably a combination of both. The doctors told me during the first round that it was normal to have a dip in energy levels around nadir, because that was when my blood counts were at their lowest. Accepting that is what is happening, has been a lot harder though.

I don’t feel like myself. When my hair started falling out during the steroid taper, and I cut it shorter and shorter, I kept trying to find a new identity along with it. Coloring it fun colors, and denying that my life was changing as the diagnosis got more severe, and the treatment options more debilitating. When the first round of Cytoxan left me holding clumps of hair, I felt empowered for about a minute after having what hair remained, off. Then I felt lost. My wig doesn’t fit me well, and though I can go to the wig shop and have a new one made, and fitted, the process of getting myself there is difficult. (The shop is about half an hour from me, and I cannot drive.)

Friends have fallen from my life, and the people I expected to reconnect with upon returning to San Diego a year and a half ago, haven’t all been understanding regarding my limitations. Why would they be? Some get it, but some don’t, and almost nobody understands the emotional aspects of it all. I have no hair. My once clear skin is red and bumpy. My weight fluctuates 10 pounds constantly due to not eating, then eating whatever it is I happen to be hungry for.

My primary care doctor increased my depression medication upon my request, but I haven’t found a psych doctor that I like yet. The practice that takes my insurance and is within reasonable distance cost wise for commuting, has really odd opinions on medications. Mostly they push what the drug representatives drop samples off of. They are making a move away from controlled substances, despite the fact that I do well when I have Xanax or Klonopin to take as needed. I will get my medical marijuana card renewed so I can get new marijuana strains that work better for my specific needs, but even that wouldn’t help me much right now. I can use it to cure nausea and help me sleep, but it doesn’t do much for depression.

Nothing really can, because my reasons for being depressed are completely logical. I don’t look like myself. My divorce has become bitter and hostile, despite the fact that we initially were in total agreement regarding terms. Things with “the guy” are still comfortable, but as I become uncomfortable in my own skin, I risk everything around me, including our situation. Both of us tend to be anxious people, and when my own anxiety and depression mounts, I have to distance myself to spare him added stress. I know he’d do his best to cheer me up, but ultimately be brought down in the process.

Is it really depression, though, if someone is going through all of what I am going through? I’m positive that I’m chemically imbalanced, given what I take for my Behcet’s and PTSD, and my limited diet…but how does that differ from depression in someone who eats normally and has no other underlying medical conditions? Depression in the chronically ill, or terminally ill, isn’t a new issue. There is a reason that mental health questions are asked prior to each chemotherapy infusion, but that doesn’t change the internal struggle I have with myself when these moods come on. I’ve lived with PTSD for a little over 10 years, and the symptoms have decreased, only to increase with this recent loss of self identity.

For so much of my life my identity was defined by what I did for others, and who I was to others. Now that I’ve finally been forced to focus on myself, there is a shock value associated with it. Suddenly I’m thinking about where I want to be, and go, in life, and then I see where I am now, and it all becomes overwhelming. There are things we can do as people to get where we want to go, but there are so many things out of our hands. When your health becomes a roadblock to success, you feel vulnerable, and exposed. A huge part of me feels unloveable. A friend has suggested that I have been uncomfortably comfortable in the situation with the “guy” because I don’t think I deserve more.

But how could I look for more? Right now I’m barely capable of maintaining myself, let alone a relationship with another person. Financially, emotionally, physically, I’m struggling, and while there is a huge part of me that lusts after the comfort of having someone there for me in a more concrete manner, I have to recognize that I’m not in a place to return what I would take out of a partner, at least not without sacrificing some of my own health in the process.

It boils down to wants versus needs. I have to recognize that my body is a need state, I need to do what I need to do to knock Behcet’s down, so I can pick up the pieces and build the life I want. I just wish I knew how to kick the depression that bogs me down in the fight. This last few weeks has been absolutely miserable. The treatment is never fun, but this time around it was more painful because I went alone, on very little sleep, with a ton of stress mounted on my shoulders. Going alone made me realize that “the guy” could and would be there when and if I asked him, and if he were available, but that I had to lean on other friends, and myself. In that moment, I wasn’t strong enough, though. I went into that treatment on the brink of collapse, having shaved my head the night before, and dealing with stress from my ex.

I am depressed. I am anxious. I am chasing both of those conditions around and around, to the point where I must look somewhat manic to the few people who choose to still remain close to me. As I focus on my needs, and give into the sleep my body craves, I hate my body for it. I pretend pain that I feel doesn’t exist, and that I can do things I know I can’t do simply because a huge part of me wishes it were true. That I were capable of achieving whatever I set my mind to. I pretend that it is me walking my dog for an hour along the bay. I pretend that it’s me, dancing downtown, and living it up. I can only pretend for so long though, before I succumb to the sad reality of the four walls of my bedroom.

There are inspirational quotes around, and jokes, and funny photos and movies…but there is also reality. Sometimes it’s just too much to deny. Sometimes you just have to cry, and accept the raw pain of a chronic illness, and serious medical treatment.

Then there is chemo-brain, which I almost forgot to mention (ironically.) Some people have said that the chemo-brain scenario undoubtedly contributes to depression, because you’re in a fog, an you’re operating slower. It’s definitely a real phenomenon, and I’m grateful I’m only taking anthropology during chemotherapy (thus far anyhow) because the professor agreed to let me audit the course from home versus come in and do the labs. (I still need to sit in on the course in six months when it’s on campus, but that’ll be doable, hopefully.

If there was anything I clung to, it was that I was in graduate school, and I had a plan for myself. When that all went out the window, I lost my identity as a student. Now that I have one class, I’m thrilled, but I’m still freaking out. What if I don’t do well in this class? What if they can’t fix the filing grade I got from taking an incomplete and not finishing within six months? (I took the course during Rituxan, couldn’t finish, and then the first month of chemo fell RIGHT on the six month mark, so I obviously missed making it up.)

I’m the one who tells everyone where everything is, courtesy of PTSD hyper vigilance now I’m the one running late due to misplaced keys, or sim,ply running into a room to get something and forgetting what I came for. My identity has been stripped to the bare bones, and it truly is a struggle for me to figure out what I’m going to do at the end of the day to define myself i na positive way. Right now I just feel like that “sick” girl.

Depression Depression Anxiety

Fear and Depression

First, this won’t be a totally depressing post. I am happy that I have a treatment protocol and path to potential remission. That my doctors are listening now is a good thing. I am, however, terrified about a lot of things. My life seems to have spiraled lately and I’m trying to grasp at the positives while accepting that things will just suck for a bit.

My lease is up in mid-March, and chemo is planned until April. My roommate and his girlfriend seem to be stepping things up, and I’m anticipating him wanting his own place, or potentially moving her here to be with him. That leaves me homeless, sans roommate, and at the tail end (hopefully) of chemo. Living here is expensive. I could swing a studio, with alimony and disability, but I don’t know if I’d qualify since the income requirements are what they are. I’d have to start looking or a roommate ahead of time, mid-chemo, and that’s not an easy task. Most of my friends are married or in relationships that are moving towards cohabitation.

It isn’t that i don’t want to live alone, I could make a cute studio work, it’s just that my income will never be however much it needs to be to qualify. Even with the guaranteed income of the alimony (if the divorce is finalized) and disability (if that gets together soon) doesn’t mean the complex will take me. I could talk to my current complex about the rates on studios, but I suspect that they’d be expensive, and honestly, I’d rather live a block or two over. Obviously I’d give up location if necessary, but living here gets me out more often which is nice.

I think the moving factor has stirred up a lot of latent stress, too. I am okay single. I prefer not to be, but it’s not a codependency thing. I’ve learned through illness that it’s okay to ask friends for help, but I’ve also learned that I can handle things on my own. There is no shame in dialing 911, and there is no shame in ordering groceries because the thought of the store makes you clutch the toilet. With chemo looming, though, I worry again about caregiver fatigue. Most of my caregivers are in serious relationships, and have to drive a ways to get to me. The others have sort of faded as my health needs increased, despite me refraining from asking them for assistance.

Life is complicated, and I don’t know much. I know I want to work in a laboratory field, preferably DNA or genetics and in research. I know I would love to have children someday, but that gets hard because I’ve had to recently accept that those children may not biologically be mine if I need to use an egg donor.

The biggest thing is the thought of coming home alone. I’m an introvert, and I need my quiet time and space, but I thrive on having someone in my life that I care about and who cares about me, too. It’s not about labels. It’s not about plans for engagements, or weddings, or anything like that, it’s just the connection. If he has a bad day, I’m there, and if I have one, he’s there. We do our own thing, but at the end of the day there is someone there to cook for, to cuddle with, and to lean on.

With my failed marriage it was one sided. I was the one that was there, always, even as someone to abuse. I still cooked, showed affection, did the things you’d expect in a loving marriage, because that’s who I am. Now without him, I’m stronger, but I still crave those activities. It isn’t about codependency, but my own drive to be that person for someone, and to have them respond in kind.

Chemo scares me because I worry it’ll be a while before I can truly date, and I worry that finding someone who is similar to me will be next to impossible given my physical challenges, and illnesses. I’m not discounting the guy, he’s obviously still in my life, but I’m not putting pressure on him because putting pressure on people is absurd. We both knew that this was casual, and while we’ve become best friends, he doesn’t know what he wants, and just because I do know the outline of what I want, doesn’t mean he’s required to conform to it. People need to follow a path to happiness, and if you’re included in anyway along that path, be content. I’m happy that he’s happy right now, and it’ll work itself out, and we will always have our friendship.

My age tweaks me out, too. I’m 30. By the end of chemo I’ll be 31, or nearly 32. I can’t help but do the math on finding someone who wants me, despite my flaws, and that includes the health ones, who also wants kids, but is okay with the idea of egg donation if it comes to that. When do I become a mother? It isn’t like I have a timeline, but when you know chemotherapy fries your eggs, you have to wonder how many do you have left before premature menopause kicks in?

Lonely. Afraid. Depressed. I can be in a crowded room, and get lost in thoughts that throw me into a tailspin. I feel bad because the guy can see it, and I can’t hide it right now. The treatment is as scary as it is hope inducing. I’m not open with him regarding the full extent of the reasons, but that’s because he’s a fixer, and I don’t want him to feel obligated to find me a place to live, or back off of what we have so I can find someone to fill the roles that I’m craving. Now isn’t the time for me to find a partner, it’s time for me to focus on getting well. He makes me happy, and that helps me feel better, which is more important at the moment. There may come a time when we have to evaluate what we’re doing, if we’re sacrificing things we know we want because we care for one another, but not in the way that we need, but for me the time isn’t now.

Life is a mess. It can be beautiful, but it’s still a mess. Like just now, I took a 20 minute break because there was a fire call at the building across the street. The dog, suspecting the emergency services (and there were a ton) were here for me, immediately needed to be outside. It was drive I couldn’t deny him. He has to learn the difference between my emergencies, and emergencies in general. It took pacing the street for him to realize I was okay, at which point we came back, and he went into his crate to sleep off the stress.

Stress. It make me angry. I stress out the people who care about me, my friends, my family, though mostly my friends. The guy says I can call and talk to his family for support, but the truth is I don’t know what that is like or how it would feel. Plus I’ve never met them, so talking on the phone would feel weird. My mother only texts me, and my dad calls but not often. Support from my dad comes in the form of jokes, and being told to stay tough. My mom is dubious, and completely off the deep end about all of it. I guess years of denial regarding my health status have caused a complete breakdown in terms of dealing with reality. They don’t give chemo to healthy people just for fun.

I know what I want doesn’t matter in terms of my health, because what I want is to say screw chemo. I want to take the vacation, or a vacation. I want to run away simply because I can. I want to go with the guy on a business trip overseas, despite the risks, just to say  I’ve been somewhere different. Screw not having an updated passport, I’ll rush it! I want to ignore the increasing symptoms, the miserably pain, vision issues, and GI symptoms. I want to pretend my skin isn’t covered in sores, and that my hair isn’t falling out in clumps. I want to wear a wig and pretend it’s my hair, and not tell anyone the truth.

Instead I’m planning for chemo. I’m lying to friends and family about how positive and optimistic I am, because that’s the girl I created. So many times I’ve said that this treatment will work, only to have it fail, and I gracefully accepted defeat (in public) then sobbed in the confines of my room. I’ve admitted I’ll need help with this treatment. I know my body will be beyond unhappy. I also know that what I want isn’t what I need, and that the life I want to to live is being lived by others right now.

The physical pain detracted from the emotional pain for a while, but I’ve grown used to the physical pain. Now I’m juggling both. I wake up and I can’t move. My neck feels like it’s full of glass, and worse, when I move it I could swear it was broken or breaking. Every joint hurts, though lately the back pain has been so intense I’ve questioned my kidneys. I’ll buy a urine test kit tomorrow to make sure nothing is infected. With each pain I tell myself this is why I need chemo. When I can’t eat, go to the bathroom normally, or see clearly, I tell myself that this is why I need chemo. The unseen damage to my brain and nerves, the drive for a life, THIS is why I need chemo.

Still, what will chemo steal? Why is my ex moving forward and on so quickly, while I’m being handed what feels like a universal punishment. What did I do? Nothing, of course, but it still feels like just maybe I did.

All I want is someone to come home to. Someone who is there, for me to comfort, and for me to give comfort to. I’m not codependent, I’m caring. I thrive off that integration, despite my introversion. I don’t need love, not if they’re not ready, but I’d love closeness and understanding. I’d love having someone who knows I have them back.

Instead I wonder if I’ll have to move away, to a more affordable town. Start all over. Bald, but hopefully in remission. Wishing that things could have been different here, that I could have built a better life. Maybe remission brings better things. I don’t know. I just want there to be hope beyond this.

I want someone to hold me, regularly, and want me, despite my flaws.

Fear and Depression

Cytoxan (Cyclophosphamide)

So much drama, and so much going around and around, but I guess that’s the joy of being chronically in. I swear, we should all write passages for a book called, “Chronicles of the Chronically”. This week my pain levels have hit a new level of horrible, and since I can’t really take narcotics without having to worry about potentially having a seizure, I’ve basically just had to suck it up and deal. This has meant a whole lot of showers, heating pads, and surprises. Surprises? Well, for example, one day one set of joints will hurt, the next day, a whole different set will flare up. Yesterday my feet opted to get in on the fun, which I wasn’t really aware of until I got out of bed. Every step, you could hear cracking, and it felt like bones were breaking.

My ex, being the wonderful piece of garbage that he is, has decided that, rather than just go through with the divorce as we agreed, he wants to get a lawyer, disagree with everything, and force the proceedings into court. He doesn’t realize that this will drag things out even further, and worse, cost him a whole lot of money. I’m hoping I won’ get slammed with court fees because I’m disabled and he should have to pay my fees, but we’ll see how it works out. For someone who wanted this over and done with, he sure picked a stupid thing to do. Of course he’s one of the stupidest people I know, so that’s not exactly a huge surprise. He probably figures, since I can’t make it to court, he’ll get a default agreement, or get what he wants. The idiot forgets that I am severely ill, and have a fantastic lawyer. one doctors letter, and boom, I’m officially excused from court proceedings for at least six months, and it also makes him look like an ass because it clearly states I haven’t been able to work, and will continue to be unable to work.

It doesn’t mean the news that he was pushing it to court didn’t stress me out. I found out he’d done this shortly before I found out we were officially moving onto chemo. As far as he knew I was already doing chemotherapy like treatments, which I was, so in his mind I probably wasn’t as sick as I truly am. My misfortune has become his misfortune though, since his girlfriend is due in February. If he truly wants the baby to be able to get Tricare, he can’t have a wife as a dependent, who isn’t the mother of the child. I’ll be doing chemotherapy until mid-April, so unless they want to pay out of pocket for the appointments and birth, he’s going to need to stop being unrealistic.

I think the hardest thing for me has been knowing that he’s supposedly expecting a child with this young woman, and  may be losing the ability to have a one myself. The odds on my regimen range from 60-70% in terms of ending up infertile. Knowing that leaves me 30-40% is comforting, but not really as comforting as having eggs frozen just in case. I found out this week that freezing my eggs isn’t an option. My doctor doesn’t want to delay the start date, and we’re talking about starting next week if the infusion center has an opening. We did talk about Lupron, but there isn’t a ton of clinical evidence it works, and she’s concerned the side effects of menopause could mask whether the Behcet’s symptoms have started to abate. There is also some concern about hormones again, and how that impacts my disease. Would putting me into menopause, then pulling me out of it, end up making me flare immediately after we reverse it? I did have a lot of flares concurrent with my menstrual cycles.

The guy, for his part, has been supportive, joking about whether there is anything sexual that can be done with bald heads, and chatting with me about wigs. He’s also repeatedly told me how he’s here for me, despite my concern that I may vomit and he may hear me. Other friends have come out of the woodwork, too, and it’s nice to know that I’ve got people. Most can’t physically be here, but I know they would if they could. I did cry because I have lost a lot of friends being sick. I was talking about it with the guy, and I told him I felt lonely, a lot, like my illness drives people away, and then on top of it, it prevents me from making new friends. Being introverted just magnifies the effects.

My shitty insurance, while it covers things financially, often only offers me shitty providers, and in terms of mental health providers that’s majorly clear. I liked my counselor, but the doctors regulating my psychiatric meds have no clue what they’re doing. It’s scary when you’re looking into black market ways to keep yourself plugged into society because your doctors have gone crazy themselves. (I’m talking getting backup meds from a friend, not street meds, though there are a lot of drug deals going down as of late.)

Who would I talk to about this stuff besides other sick people though? The guy asked if I thought about looking for support groups, and while it’s a good idea, I also had to chuckle because any support group for the chronically ill, is bound to have a lot of absenteeism. I know I’ve folded under pressure lately, feeling like crap, and wanting to just sleep a little longer. I force myself to wear actual pants to the guy’s place, but the truth is, I’m in pajamas so often ,buying a few more pairs seems like a good investment. (Note: long legs = buying mens pajama bottoms to be cost effective. Victoria’s Secret works, but is the cost worth it, really?)

So chemo. Legitimate chemo. My mother oh-so-kindly pointed out that it’s not real chemo, like cancer chemo…even though it’s the same drug. True, my schedule is less rigorous and involves less drugs, but the side effects, and dosages, still make it a shitty thing to look forward to. As the guy has said, though, I can think about it and prepare for it, but I also need to think about and plan for the end of it. Remission. Vacations. FUN. I had to postpone my trip to Mexico, sad, but I didn’t she the funds anyhow. I’m determined to get to a nice hot tub, somewhere it snows, at some point during the treatment, maybe around New Year’s. I can take a real vacation once it’s all over. I’m also kind of hoping my hair just falls out at this point. Post Cell Cept and steroids, it’s just falling out and breaking constantly. I don’t know how I have any left except that I had super thick hair before hand. My scalp has hurt lately, and more hair has been coming out, so I’m thinking with chemo, it’s bound to just abandon ship.

Cytoxan (Cyclophosphamide)