Self Advocacy and Alternative Treatments

I am not a Google doctor…but I do have to do some research on my own behalf. With a rare illness, and even rarer manifestations of that illness, my own doctors often take to the internet in search of treatment options. Having failed literally all the conventional treatment options for Behcet’s, I’ve entered the realm of last ditch efforts, and when it comes to trying random things, Google isn’t really the worst thing.

The other idea is searching treatments for more common ailments, like Lupus and MS. Everything is theoretical, which would be fun on paper, but is much less fun in real life. The current idea I have, is plasmapheresis. Behcet’s is actually listed as one of the disorders plasmapheresis treats, but it’s not something commonly done. Whether or not my rheumatologist will be willing to try it, I don’t know, but I’d prefer to try something new, instead of committing to another round of chemotherapy.

How desperate do you have to be to ask doctors to literally filter all of your blood? I don’t know. I’m having constant tremors and muscle spasms, and neurology knows that this is the beginning of a serious neurological flare. Since we don’t know exactly how the Behcet’s is attacking my nervous system, it’s not possible to concentrate on the specific mechanism of attack. I compare it to a nuclear bomb. I know that we will be basically attacking everything, including the innocent parts of my body, but that’s what we did with chemotherapy, too. I’m embroiled in civil war right now. My body is attacking itself because it genuinely doesn’t know how to target the true hostile entities.

Another alternative treatment I’m already utilizing is medical marijuana. It’s something I never really thought I’d be a proponent of. As a teenager and young adult, I never even tried marijuana. It wasn’t something I was interested in. Then the nausea became unbearable, and I was going days without eating. Marijuana became the only option  I really had left. The effects of the right strain, are beyond description. IV Zofran is amazing, but not something I can do at home, and the oral options have to be processed before relief is delivered. I don’t always have 30-60 minutes worth of vomit avoidance in me. Marijuana relief is 5 minutes or less with vaping. The right strain (for me the best is Blue Dream) provides more relief than anything else I’ve tried. It also provides benefits beyond nausea relief, that would usually require additional medications.

There are those who judge me, and it frustrates me. I’m not vaping to get high, I just want to be able to eat some toast. I want a moment where I’m not consumed by nausea. Yes, there are strains I use that do cause a high, but I generally only opt for those strains if I can’t afford Blue Dream. The cost is, unfortunately, becoming something prohibitive. I’ve contemplated asking for Marinol, but because it’s a capsule, it still takes time to process. This is an issue because I have gastroparesis. You want fun? Struggle with nausea, but have a GI system that doesn’t process food, drink, and medication, correctly.

I don’t have a port. All of my chemo nurses, and phlebotomists, wish I had a port. If I had a port, we could get me IV medications, like Zofran, but my neurology team has begun to worry about Zofran anyhow. (Supposedly it has an increased risk of seizures, but so does severe dehydration.) I would love to do IV fluids. I would love to push most of my oral medications IV. All of this, but I would still utilize medical marijuana however possible, because it really does hit most of my symptoms effectively, and bypasses my horrid GI system.

Honestly, being chronically ill is all about finding what works for you. It starts with a wonderful medical team, extends to developing a support network, and ends with self advocacy. Some of my doctors aren’t big on medical marijuana, but after seeing me shrink to 120 pounds (I’m 5’10”) they mostly gave up telling me what I should and shouldn’t do in the marijuana situation. Vaping some weed was preferable to placing a tube for feeding me.

You are your best chance at receiving the care you deserve. It took me a long time to feel comfortable standing up to physicians, and asking for second or third opinions. I’m still not fully comfortable, but I know that I need to in order to get the weird care that I need. Having a rare illness can be extra challenging. There will be plenty of doctors who tell you that it’s all in your head, but if you know the difference between mental symptoms and symptoms of an outside condition, you need to push. I was told for years I was crazy…then they found out it was Behcet’s. Everyone who had told me I was nuts, felt bad, but I didn’t scream and shout, “I told you so!” I knew then, what I still know…I’m a weird rare situation, and it makes sense why nobody could figure it out for so long.

Be your own advocate, and seek advocacy if necessary.

Today I emailed a social worker to see if she could help me navigate the system I’m stuck in. If she can’t, then I’ll seek help during my next hospital stay. I’m not naive. I know there will be another stay, and it’ll likely happen sooner rather than later. As my symptoms increase, and my ability to care for myself decreases, the likelihood of going inpatient increases. Next hospital stay, I’ll be talking to a social worker affiliated with the facility. I want to navigate a difficult system, and I want to come out with whatever is best for me.

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Self Advocacy and Alternative Treatments

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

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)