Self Advocacy and Research

There is a fine line between becoming a Google doctor, and self advocacy along with research. When it comes to having something like Behcet’s, the treatment options are really all borderline experimental. We can treat the symptoms, get into the more extreme treatments, and then when those don’t work, what happens? Well, you end up like me…tripling your immune suppressing drugs, going on a six week steroid taper, and sleeping more than a sloth in a coma.

When I was having severe neurological symptoms, there was discussion amongst myself and a well educated friend, about things like plasmapheresis and IVIG. The former seemed the most promising, with the latter seeming like an option should they find out my immune system was also somewhat deficient. Plasmapheresis was an interesting find for me, because it has been cited as putting many patients with many different autoimmune disorders, into remission, or at least into periods of remission. I know I’ll never be off of immune suppressing medications…but the idea that I could be free of steroid tapers, and symptoms, is kind of everything to me. I mean, I can’t imagine what it would be like to make plans, ahead of time, and not have to worry about fainting, seizing, and of course, how to eat properly so I don’t pass out but also don’t vomit.

So how do I take what I’ve learned online, and apply it to real life? I don’t know. I’m not that patient who suggests things to their doctors, but I also have come to realize that my doctor is open to my ideas at this point. We didn’t think chemotherapy would fail. To be honest, we’re not totally sure why it failed in such an extraordinary fashion, though my suspicion is that I got a nasty cold, right around the time I began to be exposed to some really nasty stuff in my apartment. My immune system was triggered, I had to lower and even stop the Cell Cept, and that is the perfect storm for relapse. Initially we thought it was minor…but now I’m thinking it was just the beginning of this larger relapse.

Dizzy. Nauseas. Exhausted. In pain.

That is how I spend my days. One weekend rallying to spend time with friends, even though we didn’t do anything insane, turned into me laying in the grass because my legs literally stopped working. The steroids have at least encouraged my appetite, though they haven’t done anything to really help me digest things appropriately. At least the GI bleeding has taken a hiatus.

I want to tell my doctors that we need to try more, that I’m not ready to give up and just accept my life is how it is. I also don’t want to suggest something, only to have them scoff, become annoyed, or worse, try it and have it fail. Where is the line? What is helpful versus ridiculous? I honestly don’t know, but the struggle is becoming insane. One vaccine has left my body struggling to function. My diet cannot sustain what I need to function properly, either. The pain, the exhaustion, it’s all just so overwhelming.

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Self Advocacy and Research

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

So one of the hardest part about this relapse, has been adjusting back to a life where I really don’t eat effectively. I’ll be calling a gastroenterologist, and nutritionist, but I know the testing they’ll force me through will be miserable. I’ve lost count of the times I’ve been scoped, and we never learn anything new. Major gastritis, the occasional rectal ulcer, and overall miserable inflammation. I know I have other ulcers, but I’ve never been able to manage getting scoped during a severe flare. While I realize it would be theoretically valuable I’m not sure what the actual point is. We know I have Behcet’s. Hell, the mention of potential vascular digestive disease, was noted years before my diagnosis, but never mentioned to me. The doctor actually wrote, “possible GI Behcet’s,” with a question mark, in my chart, but never informed me, or my primary care physician.

A few years ago I’d adjusted to the fact I didn’t eat much. I was losing dangerous amounts of weight, of course, but it hadn’t really even phased me. I didn’t feel hunger, or thirst. Often I’d go until the evening before realizing I hadn’t eaten anything, and had only had maybe one drink. As dehydration became an ongoing concern, I made sure to drink…but it took force for me to do it. Eating never seemed like an actual priority, because I wasn’t hungry. There were times when I’d eat a granola bar, and feel sickly full for the rest of the day. I’ve eaten breakfast, and thrown it up at bedtime.

When I’m home alone, I don’t really think lately about how I’m not eating much. I force myself to put Boost on some cereal in the morning, and then drink G2, or Powerade Zero throughout the day. I opt for those, not because I want to avoid calories, but because they’re not as strong flavor wise as full on Gatorade or Powerade. Lab work has shown that my potassium and calcium are barely within the normal range, so I make sure to go for electrolyte drinks whenever I can. I’m already noshing on Tums like it’s my job, so I’m not totally sure why my calcium is low, but I can only do so much.

In public, my inability to eat is a whole different matter. It’s embarrassing. I met a friend for the first time this weekend, and it was so awkward to take her to brunch with a mutual friend, or order in food, and have to explain to her that I couldn’t stomach it. I ate half a piece of plain gluten free french toast, and felt like I was full of razor blades. I later forced myself to finish another full piece, and a half of another half, before having to call a quits. This was after the benefit of Zofran, and carafate. Following that it took several hours before I was comfortable enough to move around, and ultimately some medical marijuana to prevent the nausea from consuming me that evening.

After a weekend on the go, my body was protesting violently. I was drinking as much G2 and Powerade Zero as I could stomach, medicating appropriately, but crashing hard. On Sunday we were all going to the botanical gardens, and I figured if we parked close, and only did the gardens, I could push through it. There ended up being an event going on, and I couldn’t bring myself to refuse the idea of walking through the park. I knew on the way back from the fountain, as I insisted I needed some sort of beverage or preferably an  snow cone, that I wasn’t going to make it long. I’d accidentally left the G2 in the car, and even if I’d had it, my legs were just giving up the fight. Through the weekend I’d had neurological issues in terms of my heart rate and dizziness, but I’d managed with both medical marijuana, and some newly prescribed klonopin. (At night I use clonidine.) We all approached a shaved ice truck, but it was too late. I knew I was going down, and the only thing I could think of was to gracefully plop down in the shade under a tree, lay back, and try not to cry.

In the end my friend who was with me through chemotherapy, and everything else for that matter, came over, and noticed the tears in my eyes. The new friend was getting our drinks and shaved ice, and he assured me that it was okay. Nobody was judging me, and I would be back on my feet in no time. I just sat there, cursing my body for failing me. After a few minutes I was able to push myself into a sitting position, but I’d lost all feeling in my legs. They rewarded me occasionally with some muscle spasms, but remained totally numb. I was literally poking myself, and I couldn’t feel it. This was scary because while I’ve experienced the sensation of not knowing where my legs are, I’d never actually tried hitting or touching them to see if I could at least sense external stimuli. The answer apparently, in bad situations, is no.

Eventually I ate some ice, rolled a cold water bottle on my legs, and was able to walk to a bench with assistance. My new friend was sweet about the whole thing, and my other friend brought the car around. I was just embarrassed. I was also angry. I’d spent the prior week preparing for the trip with an ER trip, two doctor’s appointments, and IV steroids, as well as oral ones. (I’m going on a two week taper starting tomorrow). We knew I was flaring up, but I thought I had a handle on things, I just hadn’t known where the flare was headed.

One new sign of my Behcet’s has been the annoying development of something called lived reticularis. From what I understand they aren’t totally sure what causes it, but it’s found in patients with autoimmune conditions, and is thought to be an inflammation  and/or spasms of the blood vessels near the surface of the skin. Unfortunately for me, mottled skin in the abdomen is also a sign of some pretty serious, and even life threatening conditions. It’s also not as common in the abdomen, as it is in the lower limbs, which made the whole thing a huge concern for my doctor. It was such a concern, that when I emailed her on a Sunday about whether or not I should make an appointment for steroid injections for my other symptoms, and mentioned the “rash” with an included photo, she immediately responded and suggested I go to an ER for an exam, and IV steroids.

I wasn’t that concerned, but went into the ER anyhow. I’d been having GI pain, and figured maybe it would be a good idea to get the damn thing checked out. Plus, Sunday nights are usually slower in the ER, more so than Mondays, and my primary care doctor was on vacation. The ER was slow…but because of my medical history, and the look on the triage nurse’s face when she saw my abdomen, I was taken back quicker than usual. I also saw a doctor while I was still finishing putting on the gown. Blood work was taken, IV’s were started, and a CT was ordered. During the blood draw I kept clotting in the tubing. My IV actually blew, filling my hand with saline, and requiring a second IV. At this point they were very concerned about my vascular system. They informed me, up front, that there was a good chance I was throwing clots in smaller vessels, or even in larger ones, and they were doing the CT to check for abnormalities, the blood work was for the same reason, perhaps even more so given my severe allergy to CT dye.

After the IV steroids, I cried. The rush from the steroids, combined with finding myself in the ER, facing potential admission to the ICU, was just too much for my tired brain to process. When you spend six months enduring chemotherapy, only to face such a potentially severe complication of relapse, a part of you breaks. Luckily for me, a 4-year-old who was in a car accident with her parents, was put in the room next to me, and she was hysterically funny. This kid took an airbag like a champ, apparently had an abrasion on her forehead from it, and was laughing saying, “Balloon go boom in car, right on face!” Her parents were crying, and this kid falls off the damn hospital bed, lands on the hard floor (I heard her), and laughs going, “haha I fall!”

That kid pulled me out of a panic attack, allowed me to find a way to get the TV in the room turned on, and settle myself down.

In the end my tests were normal, but I was given the option to stay if I wanted to stay. They couldn’t guarantee that the vascular pattern was totally benign, but I also wasn’t ready to stay in the hospital. I went home, promising to follow up with both my rheumatologist, and PCM. I saw my PCM three days later, where I was informed that livedo reticularis, in my case (as well as in the case of many others), is merely cosmetic. Since being on low dose steroids, the appearance has lessened to some extent, though it hasn’t totally disappeared, and has had moments when it is definitely worse than others.

Additional issues have included an overwhelming increase in fatigue, as well as a significant increase in heat intolerance. I’ve spent an uncomfortable amount of time laying on my bathroom floor after baths, and really need to get a shower head that detaches so I can wash my hair easier. I gave up standing in the shower a long time ago, unless it was to rinse my hair, but even that has become a rather dangerous endeavor.

GI Behcet’s, Neuro Symptoms, and Livedo Reticularis

My Disappearance

I’ve been in this odd place where things are going better with the Behcet’s, but not better overall. To say it’s discouraging feels like an understatement. My neurological issues haven’t gotten much better, despite my Behcet’s being relatively in remission. For a while I had no symptoms, but due to repeated infections, I had to stop taking Cell Cept for a while. I’ve noted some ulcers on my legs, but nothing like the ones before chemotherapy. My stomach has not responded as well as I had hoped.

Weight gaining happened, but it’s not because I’m eating healthy. I cannot digest things that are difficult to digest normally. No meat, no dairy, and definitely no raw vegetables or fruits. Greasy foods also give me issues. Today I noted a decent amount of blood when I went to the bathroom, which is frustrating. My neurological symptoms have been brutal, and my belief is that it’s related to my stomach issues. I cannot digest well, leaving me either dumping food through very fast, or (more commonly) having food sit in my stomach for hours upon hours. My heart rate and blood pressure are still erratic. Seizures have been relatively well controlled with the addition of a new medication, but consciousness isn’t going great. Heat, stress, and fatigue, all cause me to see stars and black out.

The financial toll has been severe. I’m looking at trying to return to work because my disability was denied, but no place near me works with my health. I can’t lift, bend, walk, or stand, for any prolonged period of time. I also know that any job, even if it met my physical limitations, would be hard to keep because of my fluctuating health. One day I feel great, the next I have the shakes and can’t get out of bed. There isn’t a warning, either. I literally wake up some days, and my body just can’t function. I’m hoping neurology will officially diagnose me with POTS, the hyper adrenal form, and begin the process of getting me a wheel chair. I personally hate the idea of people seeing me in a wheel chair, but I also hate having to avoid things on my weaker days.

Behcet’s takes a toll on your body, as do the treatments for the condition. I don’t know that I’ll ever experience a true remission, because symptoms seem to linger even when the disease isn’t very active. My fatigue is brutal, and neurologically it would appear that I’m doomed to have issues regardless of the status of my Behcet’s. POTS is a secondary condition that a lot of people with autoimmune diseases experience, but diagnosis is difficult. I did a 24-hour urine years ago to test catecholamine production, and the results did show an elevated level of catecholamines, but at the time we were looking for adrenal tumors…I had none.

I’m frustrated. I know my body, and I know medicine, so it isn’t difficult for me to put together my symptoms and recognize how clearly hyper-POTS fits my set of symptoms…but I can’t do anything about it. The doctor has to diagnose me, and thus far all he’s stated is that I have autonomic neuropathy of some sort. When I see him in a few weeks, I plan on bringing up POTS specifically. I hate being the patient who tries to diagnose themselves, but then again, how else do I push for my needs?

My roommate is pushing for me to get my license back, but it isn’t that simple. Even if I could go six months without a reported loss of consciousness, I still wouldn’t be able to drive in a lot of circumstances. My ability to focus, sit up, and not black out or get dizzy, is very limited. Additionally the stress of going back to work, would mean that I wouldn’t be able to drive safely anyhow. He means well, but he just doesn’t get it. Not having a license sucks, but it’s also a reasonable safety measure that I understand. I may get warnings before seizures, but that doesn’t mean I am safe. Even if I can pull over and relax, it can take hours before I’m okay enough to drive.

Life just feels like it’s slipping away. I want so much to get into a normal routine, work, dogs, food, friends…but it feels like a pipe dream. I just don’t know anymore. I don’t know how to be myself in this damaged body.

My Disappearance

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

First Flare of 2017 (It’s Okay)

On the 19th of December I had my second round of Cytoxan, which wasn’t enjoyable, but I survived. By Christmas I had a nasty chest cold. The pain had actually gotten so severe, I had to be evaluated to make sure I didn’t have a blood clot. I was also worked up, and monitored for pneumonia, because of some fluid noted in an x-ray of my lungs. Yes, I was in the ER…twice…one time was on Christmas Eve. My primary care doctor treated me for a dislocated rib, courtesy of my cough, and for pleurisy.

On the 1st of January I was determined to have a flare free 2017, but couldn’t ignore the fact that I hadn’t really felt well since the 19th of December. Sure, I’d had chemotherapy, but had it worked too well…yet again? After steadily f feeling worse throughout the first few days of January, I finally caved in and emailed my doctor, worried that I’d either developed an infection, or that I’d begun to have a flare. She hadn’t put in for repeat blood work, and suggested that I head to the ER to make sure I didn’t have an active infection brewing. Begrudgingly I donned a mask, called a Lyft, and went to what I had hoped would be the last crowded ER near me.

If only hopes were guaranteed realities, how happy we all would be!

The ER wasn’t crowded, but I’d placed a bet on a smaller ER, with one doctor, and he was not into the idea of treating patients expeditiously. Worse? My condition and treatment protocol put me into reverse isolation procedures…only they had nowhere to isolate me. I sat and waited in a sort of out of the way section of hallway for several hours before they had to give up, and place me in a room with patients who had the flu, just to process me in and out with the doctor. Without even seeing the doctor, they’d ordered a host of lab tests, which I was fine with, and yet another chest x-ray, which I found annoying. I’ve had at least 6 chest x-rays in the last two months. It’s becoming a bit ridiculous.

Anyhow, the blood work was annoyingly good. While I’m happy I don’t have an infection, my white blood cell count isn’t as low as one would expect someone on Cytoxan to experience. This is kind of a toss up between aggravating and relieving. I’m happy that they didn’t over medicate me, because I don’t want to murder my ovaries, or bone marrow, but on the other side of things, I am definitely having a flare.

I got hit with a double whammy of sorts. First, the chemo wiped out enough of my immune system to make it possible for a normal rhinovirus to nearly give me pneumonia. Second, the dose of chemo wasn’t high enough to prevent the stress of my ex, and finances, from instigating a flare. The best part is that the rhinovirus likely triggered an immune response which, coupled with the stress, resulted in the flare.

My eyes are being aggravating. My joints are miserably swollen, red, and painful. My intestines feel like they’re shredding while simultaneously being filled with large pockets of air. Simply put: I’m a Behcet’s addled mess.

When I sent my rheumatologist an email stating that I was feeling horrible, she had responded with a few ideas regarding what could be causing it…and the option to suspend treatment with Cytoxan. Saying that I was shocked doesn’t even begin to cover things. I have only received two infusions, and was told a minimum of six would be required to even give me a chance at remission. I went into this treatment protocol with fight in my heart, and accepted the 6-12 treatment protocol plan with the understanding that any infections could slow down treatments. I also knew not to expect immediate results.

Yes, I’m annoyed I’m flaring, which following my ER visit is definitely what’s happening…but I don’t think it means the Cytoxan isn’t working. Knock on wood…but I haven’t had a seizure since starting the protocol. More importantly, the other symptoms were completely absent during the first round of chemo, minus a few minor symptoms cropping up close to the second round of chemo. Given the amount of stress that occurred a few days prior to the second round, I’m shocked I’m not having a more severe flare. Normally I’d have sores, and intense GI bleeding. I’m only dealing with minor bleeding, and have no sores whatsoever.

To stop treatment would, to me, be admitting defeat. I’d be accepting the idea of treating symptoms as they arise. I refuse to live my life that way. If I had to, if they genuinely couldn’t keep my symptoms managed, then sure, I’d find a way to go on living this way, but I don’t think I’m even remotely close to defeat at this point.

My next round is in 10 days, which reminds me that I need to inject myself with Lupron TODAY.

 

First Flare of 2017 (It’s Okay)

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

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?