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.

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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

Hello Remission!

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

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

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

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

Now? Nope.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’m going to live life.

Hello Remission!

Depression Depression Anxiety

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Depression Depression Anxiety

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

Wait, My Weight?

Okay, so for years I was tall and skinny, and I didn’t know I was skinny because like most teenagers I thought I was somehow chubby. I was 5’10”, and 128 pounds, yet I thought I could tone up. Whatever.

Adulthood came, and my weight was around 140, and I was content. I was slim, I wanted to be toned, but things fit me fine, and I was good. Over the years, my weight fluctuated, but that happens, I hit 25, and by then I was around 150, which for my height wasn’t terrible. And then the medication parade began. One sleeping medication made me go up to 170, when I stopped taking it, and ate healthy and exercised for a friends wedding, I got down to 135 pounds. I was happy, in shape, and things were good. Until the steroids began.

Here is the thing about me and prednisone or medrol dose packs…I don’t get hungrier. I don’t want to eat more, in fact, I have to force myself to eat…but I still gain weight. Then when I stop the steroids, my hunger comes back with a vengeance. By May 2015, I was 190, the heaviest I’d ever been. The winter had destroyed me with multiple steroid runs, and living in the middle of the woods in upstate New York hadn’t helped me stay active. I began to eat healthy and started to lose weight, but it was slow going. Then I had a seizure. Starting Keppra was like going on a cleanse, I wasn’t hungry, but I couldn’t stop having diarrhea. Everything I managed to consume, immediately exited my body with a vengeance. Soon I’d dropped to 175 pounds. It was around this time that my husband and I officially decided to separate, and I took on the stress of deciding to move across the country. The weight was coming off, but I wasn’t really thinking about it. I was eating when I was hungry. What was the hurt? I’d put on weight, I could stand to take it off.

Doctors appointments in California were always annoying. I was weighed routinely and hated the number. I wanted to be back around 150, at least, ideally 140, but no lighter. I was happy as long as I looked toned. My goal wasn’t the number on the scale so much as how I felt. Whenever steroids were mentioned I cringed. What would happen to my body? It all felt so unpredictable. I insisted on only taking them as needed, and refused new sleeping medications with any sleep related side effects. I would sort this out somehow, but my weight needed to be related to my activity and diet, not some medication side effect, if I could help it.

Prior to my knee surgery I thought I still weighed around 175 pounds, but my primary care doctor seemed dubious, and on the scale the number 160 stared at me. I was floored. How the hell had I not realized I’d lost 15 pounds? Sure I’d been walking more, and had bought new jeans, but I didn’t own a scale. After the surgery I was convinced I’d gain weight, but instead I was down a few more pounds. A month after surgery I was at 150, and a few weeks after that I found myself down to 148.

While a lot of people may find this all acceptable because losing 42 pounds over 7 months is hardly dangerous, it’s kind of daunting when you aren’t doing much differently, or at least so I thought. I turned out my calories were in the dangerously deficient range. I wasn’t hungry, so I didn’t eat. It seemed like a simple equation, eat when you’re hungry, yet here I was literally starving myself…entirely on accident.

I went out and purchased meal supplement drinks, and I’ve stock piled the house with protein rich foods. If I can get the calories in, via high protein (I’m a vegetarian and I can’t tolerate dairy so it’s not through meat) meals, then I won’t keep losing at such a crazy rate. Ideally I’d lose some fat, while building some muscle. I see photos of myself 10-15 pounds heavier and prefer that girl, because she is toned. Now I’m sort of waif-like. The guy I’m seeing even commented after returning from two weeks away that he thinks I’ve lost weight and asked if I was eating, and I assured him I was. It’s entirely possible I’ve lost even more weight, and could be lighter than 148.

So what is the big deal? I have a history of ketoacidosis. I’m not diabetic, and the instances were potentially related to a stomach bug, at least one of them was, but my body is quick to metabolize itself. If I’m burning through my muscles (and I am) as well as my fat, I could be increasing the acidity of my blood and urine. Given my recent scare with low potassium, and the fact I was dumping protein in my urine, it’s not a huge leap to assume I am going through some catabolic processes without realizing it. I need to give my body the nutrition it needs so that it doesn’t literally eat itself in an attempt to get what it needs to go on.

I wasn’t happy at my heaviest, but I’m not happy now either. I want to build lean muscle, and I can’t do that if weight is still sliding off of me. They are doing some thyroid testing just in case, but it’s an interesting enigma given how suddenly my weight gain began five years ago. They were convicted I had hypothyroidism for a while because my food diary indicated I should be losing weight while I steadily gained. Now it makes sense that I’m losing, but when you compare my intake to prior intake and my weight gain, it’s funny how such a minor change in calories can yield such enormous differences.

Today was all about protein and fruits blended in my Nutribullet. I cannot stomach much in terms of vegetables, but do plan on heading to the grocery store tomorrow to get stuff for baked potatoes. (High in potassium and easy to digest, go potatoes go!) I don’t worry about indulging here or there, but ideally I need to find consistency. One day I only ate 500 calories. I wasn’t even hungry, I had to force myself to consume what I had consumed. The next day I managed to meet goals, but just barely, by eating a whole gluten free dairy free pizza.

Protein shake powder is on its way, which will help, and I know that I’ll have a handle on it. When you can eat whatever you want in terms of veggies and fruits, it’s different. I can’t break down fiber well, so I haven’t been able to eat a salad in over a year. (Me + Salad = bathroom nightmares.) I can get the nutrition from vitamins, and supplements, so it’s not a total loss, but I’d like to work fruits at least back into my diet via smoothies. I may try spinach in there, maybe, but the green thing sort of creeps me out.

At the end of the day food isn’t enjoyable. Nausea and pain are a chronic struggle, and while they didn’t find sores in my intestines, they did find them in my rectal area, which could or couldn’t mean I have Behcet’s in the GI tract. Given the GI bleeding I experience, it’s likely, but again, it’s all speculative. (Oh Behcet’s, I loathe your hypotheticals.) Having that blocked celiac artery doesn’t help, but they can’t stent it or fix it in any other way, so it’s just one of those things that shouldn’t cause me too much discomfort but often does.

Wait, My Weight?