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

Cytoxan: Round 2

Chemo brain is a real thing. 

I had my second round of Cytoxan on Monday, December 18th. After the last round a few things happened that changed the treatment plan slightly. First off, I was having pretty significant symptoms. My doctor ordered blood work for two weeks after the first treatment, and discovered that my counts were lower than necessary for treatment, and in reality, just too low in general. Instead of increasing the dose for round 2, she decreased it. She also was able to convince my insurance to cover Lupron, a drug that may increase my chances of remaining fertile post-treatment. I’m honestly shocked my insurance was willing to cover it, but insanely grateful. There are no guarantees either way in terms of fertility and Cytoxan. If you look at the dosage and odds, statistically sterility is common, but you never know if it’ll be something you have to go through or not. I didn’t want to take that chance. As long as the hormones in the Lupron weren’t going to make the chemotherapy less effective, I was willing to do the shots once per month.

People have told me that wanting children of my own someday is selfish. What if the child is sick like me? With all the autoimmune disorders in my family, how could I possibly want to have a child who could be ill? If I want to be a parent badly, I should adopt. Don’t I worry my body can’t handle pregnancy?

To all of those people: I’ve thought about all of those things! It terrifies me that I could give life to a child who has to suffer through the things my family members and I have suffered through, but there is no guarantee that my child or children, will be sick, too. As for the suggestion I should adopt, I’d love to, but it’s expensive. My health issues preclude me from being a good candidate. I am terrified my body can’t support a pregnancy, but that’s why I’ve taken a billion and one precautions to prevent it from happening. If and when the time comes for me to start a family, it’ll be extremely coordinated. There are no surprises happening here, because I’m responsible enough to recognize the risks. (I also don’t want kids this moment. I want to get healthy, and kick around some things on my bucket list dammit!)

So, back to round one…the low blood counts were accompanied by epic bruising, and hair loss. It came out oddly, as if it were shedding evenly, but then again, a few spots were shedding worse than others. If I had an itch, and scathe it, I’d end up bursting the capillaries beneath that area of skin. I was tired, nauseas, and none of the food I wanted tasted right. My mouth peeled and bled. I was in enormous pain. It sucked.

Round 2 has, thus far, been similar, but more mild. The fatigue is definitely worse than the last time, but the others symptoms have come predictably in order, without being as severe as they were during round 1. The abdominal issues are constant, and they suck, but I’m just sort of cramming calories in when I can, and letting my body do the talking. The mistake I made during the first round, was thinking I could coerce my body into doing what my mind wanted to do. A trip to the ER made it clear I couldn’t push myself.

This isn’t how Cytoxan is for everyone! 

My dad went through Cytoxan therapy, and didn’t miss a day of work. Never threw up, never had side effects that side lined him the way I have. Some people end up in the hospital. That’s just how chemotherapy is. Everyone is going to have a different level of reaction. The amount I received, for my weight, should have been manageable. For whatever reason, my body couldn’t handle it, and things started to go haywire. It sucked, but at least we’ve founds something that can go after my immune system.

I live in California, where marijuana is now just flat out legal…though you need a medical card to buy it. Instead of trying to fight through the nausea with Zofran and Promethazine,  I decided to really give pot a chance this time around. I have never been so grateful for a plant in my entire life. While the prescriptions work, they take longer to get into my system, and they aren’t as effective as the marijuana is. It’s just a flat out fact. I need to find the right strain, because right now a lot of them make me sleepy, but the facts still stand.

Today I decided I could easily live in a studio apartment, even with both dogs. Having spent way too much time confined to my bedroom, it dawned on me that having a space slightly bigger than this, with a divider for the living area, would be ideal. Smaller living space = less distance to travel for medications, food, water, etc. I don’t know what is going to happen when the lease is up in a couple of months, but I’m keeping my eyes open. Moving 5 months into chemotherapy would most definitely suck…but my roommate doesn’t seem to be in love with having me as a roommate, and I can’t blame him.

I am not a bad roommate, I’m just a spoonie who is learning to listen to her body and respect its limitations. He’s not a bad roommate, but he’s very outgoing and extroverted, with an aversion to blood and illness in general. I thought we would mesh on a science level, and maybe we could have, but it didn’t work out. We’re basically two people who aren’t friends, but live in the same place. It would have been nice to have built a friendship, but we just didn’t.

Round #2…ugh. At least I slept through most of it. After a ton of drama courtesy of my ex, there was very little sleep the night before. I ended up getting some Ativan for nerves, and that combined with the other meds knocked me right out. It was absolutely glorious. I needed the sleep, and more importantly, I wasn’t hyperaware of the changes in my body. (I tend to get flustered when my heart rate fluctuates, or nausea creeps in, instead of just accepting it. I don’t mean to get flustered, it’s just an uncontrollable response.)

Today is Friday, and my mouth hurts. A lot. It’s dry and peeling, no matter how much I drink. I know it’s the skin turning over, but knowing why it’s happening don’t make it suck any less. It’s kind of a cruel chemo trick…the second your nausea starts to fade, and your hunger creeps in, your mouth will be too sore and gross for anything solid!

Cytoxan: Round 2

Cytoxan: Round One

It’s Thanksgiving, which was never a favorite holiday of mine. As a kid we had church donated food, and it was good, but it was also a reminder of what we didn’t have. Then there was my issues with eating due to anxiety, and then by my teen years I was having Behcet’s symptoms, but of course, it wasn’t acknowledged until my twenties. In any event, I have always looked for ways to duck out on this particular holiday. When I worked retail, I’d volunteer for dinner shifts, same for when I worked in a hotel. The last two years, however, haven’t exactly worked out simply. Last year I had knee surgery two days before Thanksgiving. This year I had my first round of chemo on the Monday before.

I went in optimistic. My thought process was that I’d feel sick Monday night, Tuesday, and maybe some of Wednesday, but by Thursday I’d just be tired and a little hungry. That hasn’t been the case. During the infusion I started to feel nauseated and honestly thought I was going to both pass out and throw up. I had the guy grab a nurse, mostly so he wouldn’t see me toss my cookies if it happened, but they stopped the medicine, gave me more fluids, then continued, and it was fine. I just felt very tired. (I had received Ativan due to muscle spasms in the beginning. They claimed it was anxiety, but I’ve had them for years.)

Each day has been worse, and it’s because I’m not drinking enough water. It’s hard to drink water when even the smallest amount of food or liquid trigger your urge to throw up. I’m not capable of ignoring that signal from my body. Some people can power through, and be like I’m nauseas, but I’m going to sip on this or that…not me. My mind is firm. If I’m nauseated, nothing shall pass.

I had Zofran with the infusion, then my usual at home dosages of Zofran, but it wasn’t enough. I used some promethazine to switch it up, and had some relief, but mostly I just slept. The problem with that is, while I need rest, I’m not getting fluids if I’m asleep. I finally asked a friend to bring me a strain of marijuana that was good for nausea. I wanted something with low THC, because I didn’t want to feel high, but enough that I wouldn’t feel like my stomach was going to kill me.

It worked.

I went from stuck in bed, to being able to slowly walk my new dog around the block. I didn’t feel 100%, but I felt so much better than I had. Today I used it again, and I may just have to smoke regularly to get through the next few days. I hate doing it, because it makes my mouth and throat dry, but I have lemon lozenges for that. I just wish regular meds worked for me. Then again, why are we so against marijuana when it clearly works wonderfully on illnesses like mine? Why am I denying myself medication that could make me functional. Make me able to get out of this damn bed and do something? I used it for what today? Water and putting the dishes away. Seriously.

My mother is in denial. She believes what her friends have told her. How I shouldn’t feel nearly as sick as cancer patients, and how the side effects for me are lower because the dose is lower. She’s wrong. The dose is the same, the frequency is different. I will feel shitty because I am nuking my body! It’s frustrating because we don’t really have a relationship beyond pretending, and now she’s attempting to become involved when there really isn’t room for her nonsense.

Side Effects

  • Nausea
  • Fatigue
  • Dizziness
  • Headache
  • Body ache
  • Sore throat
  • Abdominal pain
  • Yeast infection?
  • Bleeding? <—

So there is a really bad side effect that can cause severe bleeding from your bladder. It’s bad. I don’t have that, but I am spotting which is odd. I do have a history of getting my period when I’m not eating enough, which I’m not courtesy of the nausea, so I’m guessing the existing yeast infection has melded with the spotting to produce what looks like a bizarre period or some sort of weird bleeding situation.

In any event, I’ll take bleeding if it’s period related, because that means that I’m still technically fertile. Of course it’s old blood, so maybe it means nothing. Maybe its’ my ovaries bidding a final farewell to a world they didn’t get to know. Maybe I’m just melodramatic because my life is in a major upheaval and I want things to even out so that I’m not constantly waiting on pins and needles for the next horrifying development.

I’m supposed to be done with graduate school…if I’d never taken time off…it’s a depressing realization but it’s not like I can do anything about it, There is no way in hell I could manage classes like this, so I’d have to miss 1/4 of my next three laboratory classes, which means I could potentially graduate, but not with a good grade. Worse, I’d be exposing myself to a massive amount of germs while I have no immune system to fight them off.

Life is what it is, though. I make decisions because I have to make decisions. It’s not like I wanted to have chemotherapy. I’d hoped for some sort of IVIG therapy, or something biologic, but because of my resistance, and the likelihood I’ve developed antibodies to TNF blockers and other drugs, this was the last resort.

The whole irony of this is of course the nausea. My severe GI Behcet’s is what triggered the IV medication route, because oral routes weren’t working. I was pretty much inflamed from stomach to colon, and they knew periodically there had to be ulcers because of the bleeding. So now I’m on chemo, because I basically have severe systemic Behcet’s. Eyes, nerves, stomach, it’s all involved, and oral medications that are strong enough are too strong for my stomach to process. Chemo may make me sick, but the medication is still in my system.

So yeah, I’m tired. I’m feeling like a waste of space and time. I’ve never loved Thanksgiving, but it’s hard because I want to be normal again. my next treatment is December 19th, and honestly, I really want to do something with someone for Christmas. I don’t want to be alone. I don’t want to be left out. I don’t want to be me, or at lest the version of me that is stuck in bed sleeping and attempting not to throw up. It doesn’t have to be the guy, though that would be fun, it just has to be someone, anyone, who wants to see me that day. (Let’s be honest, the guy would be fun, especially since he’s out of town now, and will be again the first week of December.)

Now, before people judge me, “You’re trying to date while having chemo? Focus on getting well!” <—-

I am focused on getting well. The guy is the guy because it is what it is, I’m letting him choose, and while it isn’t always easy, in the end, I’m accepting of whatever comes of it. Plus if he can’t handle sick me, then the doesn’t deserve not sick me. My ex couldn’t handle my sicknesses, neither could my mom, so I’ve learned to expose people to the reality of who I am early on. Friends, potential people to date, doesn’t matter. I have this, it changes how I do things, take it or leave it!

But I still wish I didn’t have to do that.

See, the reality, the true, no bullshit reality, is that most of us, deep down, want that quintessential American dream. Nice place to live, maybe few kids, traveling, having someone to come home to, blah blah blah. I hate that in my core, that’s what I want, too. I want someone to go travel with even though I hate flying. I want to knock items off my bucket list, save up, and buy a house or condo. I love the idea that I could find someone who would be okay with buying a condo instead of a house, since my ex was completely against it. I want kids some day. Marriage isn’t important to me, which is an odd development, but I’ve realized that the legality isn’t what makes it important to the two people involved, it’s what makes it legitimate to the people around them.

Sitting here, nauseas, in a headscarf crafted by the guy’s mom, I wonder what my life will actually be like. Will I travel? Maybe it’ll be alone. I try and come to terms with who I am, who I want to be, and the reality of my potential future. Most importantly I close my eyes, and I whisper internally, “remission,” because until then, I can’t accomplish much. Does’ mean I won’t try, but it does mean accepting the reality of limitations.

Cytoxan: Round One

Wigging Out?

I got a wig. At first I felt ridiculous with it on, and to be honest, I still feel a little ridiculous. I know people who know me will realize it’s a wig, and there is fear of judgement regarding that. I’ve worn it in public a few times, and actually had several people ask where I get it cut and colored…my hair. So yeah, it passes for real, I just have to get used to it myself.

The idea behind chemotherapy, haircuts, and wigs, is that if you cut your hair shorter beforehand, and get a wig beforehand, then you can get used to both prior to the hair falling out. Also, shorter hairs falling out are less traumatizing than long ones. Since my  hair started falling out after my Prednisone taper, I’m not really sure how well that works. Every strand was the end of the world until I caved in and had 8 or so inches slowed off. Even then it was hardly any hair because it was so thin and brittle. I just had more cut off when I went to get help with the wig, because it’s been falling out, and my hairdresser suggested a bob.

Truth? I hate it. The bob, not the wig. The wig I love, aside from feeling like everyone knows it’s a wig. The wig makes me less afraid for my hair to fall out. If anything I feel like my hair falling out more will justify the wig. I’ve had some judgment for purchasing it pre-hair loss, but the people judging don’t understand I’ve already lost a significant amount of hair. The people who know me well, have seen the hair transformation, and have been shocked at how much is coming out. Long hair is my thing, it’s what makes me fee comfortable, and not having it makes me feel exposed and vulnerable. That mixed with the Behcet’s rash on my face makes me feel ugly.

Other recent Behcet’s issues: constipation. What the hell? I’ve eaten foods I know will instigate a bowel movement, and still nothing. I need to go tonight since I have some plans tomorrow, but we’ll see how it all plays out. It’s a bit annoying, but what can I do about it? Don’t say laxatives. That will just ensure that at an unknown moment, my ass will explode like an atomic weapon, and I will have no control over when, where, or the ability to get to a restroom.

Pain and fatigue are the other two big ones, but I can’t do anything about either. The pain could be controlled with pain killers, but the problem with that is that the pain killers lower my seizure threshold. So if I’m dehydrated (and I am often) and haven’t slept well, the combination could be catastrophic. My last seizure was so long and severe it scared everyone involved. I was scared once I was alert enough to understand just how bad things had been.

I want to believe that Cytoxan is going to be the medication that pushes me into remission, but I’m just hoping at this point. I thought that things were done with Rituxan, but they weren’t. Then I was so convinced the combo of Remicade and Cell Cept would work, I planned a vacation, only to have to ask for a refund when that ended with a severe reaction to the Remicade. It’s like the disease destroying my body, is somehow in cahoots with my body. My body is fighting off the medications that are trying to fight off the disease, and all the while I’m humming, “Why Can’t We Be Friends,” in the corner while I try not to pass out, vomit, or both.

Holiday seas0n doesn’t help. Not that I’d planned on going home for the holidays, I had classes, but now I’m stuck doing chemotherapy treatments, while the people around me go home for the holidays. I know I have friends that would invite me to Thanksgiving, even if I didn’t eat, or Christmas, but because I’m doing chemotherapy, they won’t (or I won’t be able to stomach it). In any event, I end up doubly screwed because then those people aren’t around when I have treatments meaning I’m fending for myself.

I’m happy the guy is coming to my first treatment so I’m not alone, even though I felt bad for asking. He’s going to be out of town for the first week of December, and then I’ll have an infusion around Christmas, and he’ll be going home for Christmas, so I’m not going to see a lot of him next month I’m sure. (He’ll be busy with friends in between, and I’m a big fan of not burning people out.)

He’s been the only one who has really stepped up consistently through this whole ordeal. Other people have helped, but it hasn’t been consistent, whether by choice, or through no fault of their own. The majority, however, have chosen not to get involved. It’s been painful to see how many people only want to be a “friend” when that means going out and doing things together. I guarantee you when certain holidays hit, like New Year’s Eve, there will be people who want to come stay at my place. It wasn’t a huge deal on Halloween, but I wasn’t feeling well, and a lot of people have their own things going on.

Maybe it won’t be, though. The other issue is that a lot of my friend are married, or in serious relationships. They’ve made their significant others such priorities that they’ve alienated their friends. I get that your significant other should be a higher priority than your friends, but only slightly, and that’s contingent on circumstances. I have friends who spend every weekend 100% with their husband/fiance/boyfriend and it’s aggravating. I don’t care how in love you are, I guarantee you that you’d be happier if you unstuck yourselves for a fraction of a second and led your own lives. Moreover, I don’t know any men who want to give up all of their man friend time, to be with their female significant other. Being sick I can’t even fathom the thought of monopolizing someone like that. I used to send my ex out while I was sick, and he’d feign like he didn’t want to, but with all of his cheating it probably didn’t matter what I suggested. Now though, I mean it when I tell people around me to take a day or two off from worrying and let me worry.

I lie. I tell people I have it all sorted out support network wise, and while I do have a support network here, it’s not nearly as strong as I let people believe. It’s just easier to pretend that it’s better than it is, so that the people who do care, and who are involved in it, don’t burn themselves out worrying. I need to be able to take care of myself, and that might mean calling an ambulance and having to be hospitalized if I’m alone during a holiday with nobody to keep an eye on me. There is no shame in including the ER and hospital in your support network.

So yeah, I have a wig, and I’m sort of wigging out. The year has flown by, and while I still don’t know what is going on with my life, I know that I have to throw myself into this fight harder than I have thrown myself into any others. This is it in terms of treatment options, and I will make it work.

I’ll also rock the long blond hair, because it does seem to reel in some positive attention 🙂

Wigging Out?

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

Caregiver Fatigue

I constantly worry that the people around me are sick of me being sick. Hell, I’m sick of being sick, and even though I don’t ask for help, people step in and help when it’s obvious I need it. Still, people get tired, especially when it’s the same people being forced to assist over and over again. Okay, so they aren’t forced, but certain friends step up more than others, and patterns emerge.

The guy has been a consistent shoulder to lean on, and someone who always runs to the store for me, or even more impressive, sits with me, through whole infusions. That being said, he’s been there even when he had to drive to me. Now, he’s within walking distance, and the general assumption of friends is that he is going to be the one who is there for me through the majority of my health woes. WRONG. 

Yes, he could and would be, but it isn’t like I expect him to be. Why? For starters, I don’t expect anything from anyone. My philosophy is that people should help because they genuinely want to, not because they feel pressured by societal conventions to do so. If I were someone who gave into societal conventions, I wouldn’t be calling him “the guy” after over a year of whatever it is we’re doing. He is a great friend, one of my best friends, if not my best friend, and while the whole situation is complicated, it’s worth it in the end.

Still, it makes it hard to explain to friends why the guy isn’t going to do this or that for me, or why I refuse to ask him to do something for me. I know it brings him down when the symptoms or treatments make me sad or super sick, and he has a lot going on in his own life to deal with. Not everyone can take care of someone chronically ill, especially when the symptoms can be intense, and not have it negatively impact them. All caretakers eventually get worn out if the person they’re caring for is someone they genuinely care about.

Last night I wanted to go out, but my body refused to comply with my brain, an I knew that I would probably pass out, or worse, have a seizure, if I pushed myself into a crowded bar. The guy as having a flare up of his own issue, and I opted for a low key, dual digestive issues cuddle fest instead. (I know it sounds gross, but it was fine, trust me.) Today I woke up in more pain than I’ve been in in a long time. I actually had a decent period of time here moving my head was physically impossible. Then the guy woke up, and he was also in decent abdominal pain. My dog made it clear he had to go out, and the two of us were there, in bed, wondering how we were going to deal with this little dog’s insistence. I knew that he was my dog, my responsibility, and that at the end of the day, moving a little would help me determine the severity of the joint pain. I used it as an opportunity to get the guy some things he needed, and the dog some things he wanted. (I forgot to get my own caffeine which really irritated me, but allowed for a nice three hour nap upon my return.)

The result of my expedition was the realization that my joint pain was legitimately not going to go away. I called another friend to get my prescription from my doctor as I was too out of it to take a Lyft or Uber, and then had my roommate pick the script up from the pharmacy across from my apartment on his way home from work. I could have asked the guy to grab it on his way back from the doctor, but I wanted him to be able to go to his pharmacy and get his scripts filled. I also wanted to prove that if I was incapacitated I had the ability to summon some assistance other than him.

While I may need him for general tasks like that sometimes, it isn’t what I need from him the most. What I need is for him to make me feel as normal as possible, despite the fact my body is giving out on me. I need what we have to be what we have, despite the fact my hair is shorter, or eventually gone. I need him to look at me the same way when my makeup is on, as he does when it’s off, despite the Behcet’s lesions on my face. I need our joking banter and light hearted conversations, along with the more intellectual ones, to continue, even when the brain fog makes the latter difficult to attain.

I need someone who makes me feel human and alive again.

Sometimes a caretaker isn’t someone who helps you with your dishes, or runs to the store for you. Sometimes it’s someone who ares for your emotional needs. The important thing is remembering that you are responsible for making sure you don’t drain them while they attempt to sustain you. I hadn’t realized for a long time that my illness was concerning him to a point that it made him anxious. He had a lot of people in his life with health issues or personal issues, and because he’s such an amazing guy, he was doing his best to accommodate them all. In turn, he wasn’t looking after himself. He laughs a lot at how often I worry about him when I’m at a constant 4-5 on the pain scale, but it’s the one benefit of living at a constant 4-5. I know how to cope and continue despite things that would trip up others.

People assume a lot about us, simply because he cares for me in a literal sense, and I don’t doubt that there is emotional caring there, too, I just try my best to steer people away from judgments based solely on what the see while I’m battling Behcet’s. He was still dating around until I got really sick, and I still worry that my illness has kept him from pursuing women and finding someone who can make him happy. Then again, the reason he’s still the guy, isn’t because I’m wrong per say, but because he isn’t sure what he wants. You can’t slow someone down if they’re already standing at a crossroads.

All of this laid out though, you have to wonder the toll it takes caring about someone, as a friend, and whatever else, when you find yourself being dragged into a caretaker role. One guy has continued reaching out to me, despite the fact we never actually went out, and despite the fact I’ve made it clear I’m not currently interested in seeing him. He’s tried to say he has cancer, and hasn’t had chemo but did and does other treatments, so he understands, but a lot of it seems like a ploy. Even if it weren’t, I don’t date more than one person at a time, I’m just not capable. (I don’t judge people who do, in fact, it makes finding the right person easier, it’s just not something I have ever had the capacity to do, and now I don’t have the energy for it.)

Things with the guy make me happy, and while I could use more friends, I don’t need friends who secretly want to sleep with me or date me. That’s not really the goal at the moment. Someone about to go through chemotherapy isn’t exactly at their prime dating potential. Sure, I could, but it’s cold and flu season, and again, I’m happy with my weird little thing I’ve got going. Why mess with a good thing?

There is also the fact that if the guy wasn’t in the picture, and I were to attempt dating, anyone who became my significant other would fall into a caretaker position naturally. That can destroy an otherwise promising relationship. I do not need to start something off with me puking my guts out and bald, though I suppose if they can get through that then the rest is smooth sailing.

I just hope that the chemotherapy isn’t overly taxing on the people around me. I’m prepared for hell, while hoping it isn’t. I’m also prepared to ask my doctors to admit me for a day or two if it turns out the drug makes me puke my guts out. Some people throw up and move on. I do not. Every time I’ve ever thrown up, it becomes a literal vomit fest. My dad used to hate when I’d get the stomach bug as a kid, because even as a kid old enough to attempt to make it to the bathroom, I would vomit with such force it would go all over the place. To this day I sleep with an empty trashcan next to the bed, and I have a set of blankets and pillows just for the bathroom floor. There is something about my system that doesn’t understand the idea of stopping once I’ve started. I’ve pulled muscles, popped blood vessels, and ended up in ketoacidosis…twice.

Tomorrow is the day I find out when I start. Everyone keeps saying “if you start,” but I know what the doctors have said, and the fact nobody was willing to call me tells me that the news is what I expect…chemotherapy. I just hope I can figure out a way to freeze my eggs before it begins.

Caregiver Fatigue

My Absence (Processing Bad News)

There is never an easy day when you have a chronic illness, but there are definitely days that are better and days that are worse. I had a glorious year and a half with very few noticeable symptoms. Then things went haywire. The issues were going to be resolved, I thought, following a trip to NYU. I would get news regarding the severity of my Behcet’s, as well as all of the treatment options available to me. Unfortunately the process was a nightmare. I was very weak, and had to take my walker with me. My dad was understandably shocked to see me with a walker, but I could walk without it if the distances were short enough. Of course that put a lot of strain on my muscles, but was worth it to avoid the stares of people around me.

The staff at NYU was amazing, and the doctor was, too. I was a nervous wreck and sent my dad to the waiting room because his own anxiety was playing off of mine. We both wanted good news, but because he has an autoimmune disorder, too, we were prepared for bad news as well. (We just never spoke about that possibility.) The doctor came in, reviewed my notes, and confirmed a few things. Regardless of what neurology says, it would appear that my seizures and neuropathy/ataxia and balance issues are related to Behcet’s. It isn’t Neuro-Behcet’s because I don’t have brain lesions. Instead, I likely have inflammation in and around my nerves. This causes the MS like symptoms I’ve had, and explains why some days are better than others. My non-specific abnormalities found on my endoscopy and colonoscopy are consistent with GI Behcet’s. Bad GI Behcet’s. All of the times the doctors said it almost looked like Crohn’s or colitis? That’s because GI Behcet’s manifests similarly. I had nonspecific inflammation of almost my entire GI tract in several of the scopes, and the patchy gastritis in my stomach indicates inflammation there, as well as prior ulcerations. I also had an ulcer in my rectum that was sent for biopsy, but the biopsy was inconclusive.

We went over my other symptoms, including the recent findings regarding uveitis. I told him that the symptoms of uveitis have happened before, but this was the first time I’d been specifically diagnosed and treated for it. With the number of systems involved, and the way my disease seemed determined to jump from one system to another, it was deemed a severe case of Behcet’s. I knew I had it bad, but I hadn’t really stopped to think about what it would mean for treatment. When you get into systemic involvement like I have, the treatment options become more systemic, too. The severity of the GI involvement places me in a position where oral medications are not that effective.

Two options emerged. The first was to try Remicade infusions, with Cell Cept orally. Even though low doses of Cell Cept had made me nauseas in the past, I hadn’t gotten that nauseated. It was considered a reasonable option. The second option, should this combination fail, was to go to Cytoxan, a chemotherapy drug. Obviously the former option would be preferably, even though the treatment timeline was two years. I left excited, but a bit worried. He had said that I likely had developed antibodies to the TNF blocker antibodies in Humira which is why it hadn’t worked, nor had the Cimzia. I’d likely done the same thing with the Rituxan, though it wasn’t really worth trying to test for the antibodies. The Remicade would work, or it wouldn’t.

On Monday, October 24th I finally met with GI here in California, and they gathered a list of tests they wanted done, including another scope. After that early morning appointment, I went upstairs in the hospital to have my infusion. I was relaxed when they took my vitals, a little hungry, and a really tired. They had difficulty finding a vein, and eventually gave up on saving me from having to go to the lab. They were worried if they kept trying to draw blood they’d lose the vein. I took two Tylenol, and a Benadryl, which was protocol, and settled into my comfy chair. The guy sharing the room took control of the TV and put the news on.

Things didn’t go as planned. Towards the end of the first half an hour I realized I felt funny. At first I thought maybe I was just dizzy from not eating, but I realized my heart felt kind of fluttery, and I had some aching that was radiating from the left to the right side of my chest. I had similar symptoms during my Rituxan infusions, but had never said anything except once, and they had just dialed back the rate. (It had been pretty far into the infusion, and on my second visit.) I told the nurse that I felt a little funny, and when she checked my vitals, she immediately stopped the infusion. My heart rate had gone from the high 70’s low 80’s, to 48 beats per minute. My blood pressure had also begun to drop, though not significantly. They called my doctor, and turned up the rate of my fluids. Eventually the aching when I took a deep breath stopped, but the fluttering came and went. My vitals were erratic. They’d check my heart rate and I’d be n the 70’s, but then 15 minutes later I’d be back into the 40’s. The vein blew, and the fluids started to infiltrate. One nurse said it was normal to have some pain at the IV site, but I knew it had blown because I saw the swelling. I was stupid and didn’t hit the call button, I just waited for my nurse to return.

IV fluids were discontinued, obviously, as soon as she realized the IV had blown. My doctor wanted me in the ER for an EKG immediately. I was wheeled down to the ER, bypassed the people waiting, and squared away in record time. The EKG was interesting because I’d had one just a few days before. Both had heart rates in the 70’s, but the one following my infusion showed that the elements of the EKG (essentially the process of the heart beating) were slower. I was still in sinus rhythm, but the findings were classic for an infusion reaction. For the next few hours I was monitored, and my heart kept up the annoying habit of randomly dropping into the 40’s and feeling like a butterfly. When it would go back up it would feel like I had just run a mile, but only for a few seconds. Eventually I was released, and defeated, I went home.

I knew that this was bad. With infusion reactions they usually discontinue the IV, treat the reaction, and begin again, at least that’s how it was in the Rituxan clinic. There was no talk of me continuing the Remicade, and as far as I can guess, I won’t be. They also refused to put me on Cell Cept, which the NYU specialist had said was critical for remission. My doctors here in California were never really on board with the Remicade/Cell Cept plan, because they felt Cytoxan was the best option for my constellation of symptoms. Knowing this, and knowing how fast my reaction came on, and that I’m not a good candidate for more steroids, I really only see one way forward treatment wise…chemotherapy. (The day following the infusion reaction I broke out in an itchy rash, and felt miserable, and that was with just half an hour of medication. It was clear that the drug and I did not get along.)

When I got back from NYU, my hair had begun falling out more and more. It was common following steroid tapers, and I was told that the Behcet’s likely was playing a role. Inflammation throughout my body, including my scalp, meant brittle hair, and hair just falling out in waves. I saw my hair stylist and had her cut off the sad ends of my hair, losing about six inches. I cried as I realized I couldn’t make a bun or ponytail with the remnants, which barely touched my shoulders. I had blue put in to cheer me up, and remind me that I was fighting for Behcet’s, a rare disorder, and something I refused to take me out.

Now, as I wait for November 2nd, when I will find out officially my next course of action, I have good days and bad days. I was asked at my first appointment after NYU, if I had a plan in place to freeze my eggs. The thought of it crushed me. My insurance didn’t cover it, and I didn’t have the money. Even if I sold my car and used what was left from my Go Fund Me, I would be short. There was no guarantee that I’d lose all of my eggs, but the risk is high. Before this my biggest worry was going bald, suddenly I didn’t care that I’d need wigs. I cared that I may never have children.

Moments like this make you see life with a clarity you wish you didn’t have. I’m seeing someone, it’s casual, but it works. We make each other happy, and that’s really all that matters. That being said, being happy has shown me what I do want in life. I want someone to come home to, someone to cuddle up with and watch shows. Someone who appreciates my introverted nature and isn’t judgmental of me for it. The problem is, I still want what I’ve always wanted, before my ex, before my current guy, before I was really dating. I always knew that I wanted to be a mother someday. I was, and am, terrified of letting my child down, but I know that the love I have to give would be enough to prevent failure.

Will I lose that dream? The rest of what I want from life has changed over the years. I’ve adapted so much of my life because of my illness. Trading my dreams of veterinary school, for laboratory sciences. Now I’m hoping for remission because I don’t always have the dexterity for that. I would love to be a physician’s assistant, but again, I would need to be able to be around sick people, so that is pretty much out, too. The lab work, I love it, and I’m hoping it’ll come back together for me. Driving, I miss that, I miss being able to blast music and head to the beach to clear my head. I never thought I would be in debt, but here I sit. As my divorce goes through, I wonder about marriage. I used to think it was necessary, for religious purposes, and because it was the next logical step. Now it’s less important to me. I wouldn’t push someone to get married, but I would get married if they wanted to. I’ve come to realize that what is put down on paper, legally, is less important in a relationship than the way you treat someone.

I do want someone, though. The guy I’m seeing, we have this weird thing going. It’s more than friends with benefits, but less than officially dating. It works for us, and that’s all that matters, but I constantly worry I’m holding him back. We really are best friends, but in terms of what we both want in life, we’re both still figuring it out. The small romantic part of my brain sometimes hopes that he’ll want me, but the rational part of me realizes I don’t bring a lot to the table. I’m a good person, with a kind heart, and a loyal friend, but as a partner in life, I don’t really have a lot going for me. Anyone who wants children? They’d automatically be undateable because I couldn’t give them a key component of what they were looking for in life.

The frustrating part is that is being taken from me, too.

I’m hoping my doctors will talk to my insurance and that something can be done to preserve my fertility. For a while I thought maybe I’d refuse treatment. My quality of life right now sucks, majorly, but I couldn’t handle a childless future. Then my flare decided to remind me why I was fighting. My stomach ulcers bled, the dizziness and nausea kicked into overdrive, and the Behcet’s headaches came back with a vengeance. Any ideas I had about giving up, were washed away.

One afternoon, after a bungled appointment (which is why I don’t find out until the 2nd what the game plan is), I couldn’t go home. I wandered around for almost an hour, then took a Lyft to the beach. I sobbed, watching the waves crash in, and the families on vacation enjoy the water. The guy (as he’s known since we don’t have titles haha), tried cheering me up when he found out I was blue. Eventually I went home, but only because I was cold. I tried to pull it together but then I had a nervous break down. I’m doing that in a separate blog.

My Absence (Processing Bad News)