Things You Wish Came With Chronic Illness…and My New Treatment Plan

I’ve been in bed most of the day, though I do count my trip to take the dog out, and my shower, as huge successes. Currently I’m realizing that I wish my Behcet’s came with a care package, or a monthly subscription box of surprise necessities. The following would seriously be on the list:

  • Comfortable Blankets
  • Fleece Socks
  • Heating Blanket
  • Heating Pads
  • Ice Packs
  • Naproxen
  • Serenity Essential Oil (DoTerra)
  • Peppermint Oil
  • Maid Service
  • Pedialyte Pops
  • Carbonated Water
  • Amazon Gift Cards (so much to read!)
  • Pajamas
  • Comfortable Sheet Sets
  • Wheelchair Gear

I’m sure I could think of more things if I didn’t have an enormous headache. The cause isn’t clear, though I suspect a combination of factors. For one thing, I’m stressed. Financially things in my life are just a total wreck. This divorce has dragged out, as has my application for disability. Without a settlement regarding alimony, I don’t know how to set a realistic budget. Currently I’m not getting enough to survive, and to make matters worse, my book stipend has disappeared and my food stamps have been challenged along with my electricity discount.

Then there is the horrendous weekend I had. Don’t get me wrong, there were good parts, but being reminded repeatedly that your illness makes you different in negative ways, isn’t fun for anyone. Now my vape charging cord is missing. It could just be at my friend’s place…but it wouldn’t be missing at all, if the negative Nancy who thought it would be fun to rub my illness in my face, hadn’t dug through my backpack. I resorted to using my little bowl because it’s all I had, and my lungs quickly reminded me that they are not okay with that option. This has all resulted in my not having access to the vape. I rush order batteries and a charger that *may* work, and it’ll arrive tomorrow…but in the meantime I have to rely on less reliable options for my nausea. Nothing really works for the pain so I’m just living with my heating bad glued to my belly.

People think I’m all for the legalization of Marijuana, but what they don’t understand is that it’s a complicated issue for me. I do think that it’s relatively safe, compared to alcohol, but unfortunately legal recreational use means I’ll never have it covered by insurance. I have an appointment with a gastroenterologist, and I’ll ask him about Marinol (which is a drug that has synthetic THC). The issue with Marinol is that patients have reported it isn’t as effective as actual Marijuana. Not a total shock given that it’s only the THC portion, and not the other ingredients found in the actual plant.

This brings me along to my treatment plan. My rheumatologist talked with the big doctor at NYU that I saw just once, and the current plan is to increase my Mycophenalate by another gram…meaning I’d take 3 grams daily, either in three separate doses of 1000mg, or two doses of 1500mg. In case I haven’t been clear in prior blogs, I’m not a huge fan of increasing the Mycophenalate. When something doesn’t work, after a period of time, I get antsy. My neurologist wanted me to get more chemotherapy, because neurologically there is a concern that permanent damage could occur. They’ve increased one of my seizure drugs, Vimpat, and I’m already beyond the max effective dosage of my Keppra. If I’m still dealing with GI issues, neurological issues, and other signs of seriously active disease, then we’ll move to immunoglobulin therapy, IVIG. Both doctors feel that plasmapheresis would likely be ineffective with my current manifestations.

Personally I’d like to do IVIG immediately. I understand the need to go through less invasive treatments first…but this whole being miserably sick thing, gets old. I have an appointment to see a well rated gastroenterologist on the 1st of December. Even though he’s well rated, my expectations are guarded. For years GI doctors treated me like I was a psychiatric patient. I was diagnosed as anorexic and bulimic, despite repeat testing that showed blood in my bowel movements. My gallbladder actually began to die in my body, it was so severely diseased. During my laparoscopic surgery, they almost had to switch and do a full open procedure. The surgeon was concerned that the organ was so badly diseased, it wouldn’t hold up to laparoscopic removal .

Yes, you read that correctly…my gallbladder was so diseased, they thought about cutting my abdomen open to remove it, because they thought it was going to fall apart inside my body.

If you’re wondering, I have a great pain tolerance.

The gallbladder fiasco aside, there has been a lot of shrugging off of symptoms over the years, along with lost medical records. I’ve had far too many endoscopies and colonoscopies. I don’t want more. We know I have GI Behcet’s. We know I get bleeds. We know that I’ve had ulcers in my lower GI tract. We know I’ve had stomach ulcers. Why the hell would we put me through another prep, put me under sedation (which is an issue for me), scope me, and ultimately end up with inconclusive results? The nausea is from gastroparesis, but that testing wasn’t done properly either. I don’t know about the rest of society, but I really don’t want to eat more radioactive eggs, and I definitely don’t want to eat the entire meal you have to eat for the testing.

What happens if you throw up during the gastric emptying study? Do they make you eat more?

I am keeping an open mind, I just really hate the whole new doctor process. Explaining to the doctor that, yes, I really do have Behcet’s. The gluten factor is an issue as well. Some doctors are okay with someone who wasn’t diagnosed with Celiac, avoiding gluten, while other doctors are absolutely disgusted by people who don’t have Celiac avoiding gluten. I did it on my doctors recommendation, it worked for some of my symptoms, so I have continued with the diet.

My biggest GI doctor concern is how he’ll handle my use of Marijuana. I would eat 1/3 of what I currently eat, if it weren’t for cannabis. If you include how often I’d be vomiting, it would probably be less than that. I credit marijuana for helping me drink water, too. Gastroparesis is no joke, and when your intestines join the dysmotility party, it’s extra miserable. Warning: TMI information regarding poop ahead…read at your own risk.

I’m lucky if I have a bowel movement one day per week. Lately I’ve had to rely on laxatives to even have one movement per week. Even though it causes bloating and nausea, I’ve started eating dairy to get things moving along as well. The problem is I still don’t go daily…instead I seem to get one day of horrible cramping, and I got a lot. It isn’t diarrhea, but I go several times, and each time I get sweaty and w ant to throw up. My body seems to suddenly become an overachiever. It’s the lazy student, who procrastinated, but then decided to try and graduate with honors.

I will literally go days with only a few gurgles to suggest my stomach and intestines are even moving at a snail’s pace, sometimes I’ll go almost 24 hours without a sound at all. Then, on P-Day, my system goes wild, and the pooping commences

Aren’t you so glad that you’re reading this blog?

GI will weigh in on the treatment plan, but I’m hoping to get a few options for managing symptoms. Critical for me would be IV fluid therapy. Just going in 2-3 times a week, to bump up my hydration, would really work wonders I’m sure. I’d also like some better nausea management skills. It would be great to get IM options for some of my medications, but dosing makes that impossible. I don’t want a port, at all, because they terrify me, but moments like this make me think about how nice they can be. IV nausea medication would change my life, but the cannabis is probably safer!

Right now I’m in Victoria’s Secret sweat pants, some random free t-shirt, and fuzzy socks. I’m covered with a gorgeous fleece blanket, both dogs, and I have a heating pad across my abdomen. Bonus sick-chick points for the literally seven pillows I have in play to keep this blog post, and myself, together.

There is no correct treatment plan for all patients with Behcet’s. We all have different expressions of the disease, different tolerances for the various medications uses to treat the disease, and different personal views on being sick. Right now I’m just repeating that to myself. I want there to be a linear path I take towards wellness, but that isn’t how illnesses like this work. I know I need to stay positive. I can’t control the various things the disease decides to do, but I can combat them with the right tools. One of the biggest tools in my arsenal, is a positive attitude.

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Things You Wish Came With Chronic Illness…and My New Treatment Plan

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.

Self Advocacy and Alternative Treatments

Neurological Symptoms Getting Worse

Things haven’t been good, and between the livedo reticularis getting seriously bad, and my neurological symptoms flaring horribly, I know that my Behcet’s is winning. I’ve been on a steroid taper, but there just doesn’t seem to be much relief. I went to neurology today, and we’re increasing my seizure medication and my neuropathy medication, but he really doesn’t have a ton of faith that it will help my symptoms, including my shakes and ataxia. It could help other issues, but there really isn’t one drug to help my specific set of neurological symptoms.

We don’t know what is happening in my brain/spine/nerves to cause my shaking, ataxia, and hyperactive reflexes. I present a lot like an MS patient, but I don’t have MS. Also, because the symptoms get worse with flares, and do improve slightly during high immune suppressing treatments, it makes logical sense that it’s related to my Behcet’s. With my GI system crashing though, there is a question of how to adequately treat most of my symptoms…while also having to embrace the reality that I’m sadly unique in how my neurological symptoms present.

Today the doctor mentioned IVIG, but we aren’t there yet. I’ll bring it up with my rheumatologist next week, just to see if that combined with other therapy options is an idea. I’ve also read some things about plasmapheresis, though again, it would be experimental because Behcet’s is so rare. If I had to do more chemotherapy to live independently, then obviously I would, but I’m desperate to try other options first. Some of the things I want may seem odd to someone who isn’t chronically ill, but for me they’re everything.

First and foremost, I want a port. I know there are a lot of risks, and the risks do scare me, but because I’m so hard to stick, if we were to take on another IV treatment, I would want to have an easy access situation. The other benefit of a port, is we could talk about hooking me up to IV fluids, and even IV medications. With my poor GI motility, it just makes sense for me to bypass my stomach for a lot of things. My seizure meds, and my immune suppressing drugs, as well as my nausea medications, are the first things I think of. Also, I have to choose between eating or drinking, which sucks. It is so painful to do either, that I’ve been giving up on food so I can drink enough fluids. Doctors are still saying I’m dehydrated though! This has gone on for years, with doctors always insisting I need to drink more water, but my body just can’t handle more water orally. IV fluids at home would really benefit me, even if we just did them every other day.

The second thing is the wheelchair, and while I’m disappointed at needing one, I appreciate that it will be a tool for me to use to become more independent. At this point, they have approved me, so I’m just waiting for the company to get in touch, and to work on what kind I’ll be getting and when it’ll be arriving. I’m still really embarrassed to need one, but I’ve fallen several times in the last few weeks, and with my diet so limited, the weakness is even more pronounced. We know from the way my body has declined in the past, that my neurological symptoms are only going to get worse. It doesn’t make sense for me to put pride over my well being. If I wait until I’m fully unable to walk, then ask for a wheelchair, I’m going to be stuck waiting for however long it takes.

The third thing is nutritional supplementation. I refuse to get an NJ or an NG tube placed.  I would likely need an NJ as my stomach is the issue, and they’d want to bypass my stomach. My gag reflex is just too strong, and living with a tube from my nose into my intestines would not be something I could handle. I also don’t feel like I’m sick enough to warrant a surgical feeding tube, and wouldn’t want one anyhow. I can still intake things orally, and I feel like if we got the right supplements I could get by. I’ve been choking down Boost, and I can tolerate potatoes, PBJ (sometimes), and sorbet. My issue is I’m not getting enough protein, or other nutrients, on my limited diet. Today I had a cup of sorbet, and that was it until 6 when I forced myself to eat some potatoes. If you’re wondering, it hurts, and I’m miserable, but at least I kept it down thus far.

I need a support network. I need people who get what I’m going through, and don’t judge me for being negative. I had a friend who was really close to me, who had multiple medical conditions as well, so I’ve been venting to her about my health lately. She is also someone I go to when it comes to how to date with chronic illnesses, and how to talk about health issues with someone you care about. Unfortunately we’re not friends anymore. She felt as though I was becoming wrapped up in my illness and letting it define me, and that my casual dating situation with the guy I’ve been seeing was unhealthy for me. Yes, I want to find someone to seriously date, but at this point I don’t have the energy to put into dating. (Not to mention I can’t eat much, and alcohol is a big fat no at this stage.) Yes, I have other positive things going on in my life, but everything has changed course because of my illness.

If you’re reading this, and you have a chronic illness, don’t feel bad about feeling bad! When you find yourself in a rut because your disease has taken over, it’s okay to process it for as long as it takes. In my case, I began losing more and more things that I’d discovered about myself in the last two years. After my marriage ended, and I was free from an abusive situation, I really started to find who I was as a person. Then, my disease progressed, and I began to lose things I’d started to enjoy. That process is ongoing, which means my frustration and sadness is ongoing. I don’t dwell on it publicly but I do vent to friends because I need help finding me. Yes, finding yourself is a personal process, but I think being sick it’s important to have people in your corner to help you. If I didn’t talk about my health, I can honestly say I would get lost in suicidal thoughts.

Really? Yes, really. There have been points in this journey where I’ve just wanted to die, and I think it’s something anyone with a chronic illness deals with. Whether or not you’re truly suicidal, or just feeling overwhelmed and the thoughts crosses your mind, it’s a real issue that requires real help. I am on anti-depressants, and I’m setting up more counseling sessions. I don’t want to actually die, so I need to make sure my mental health is being handled by professionals.

Please seek professional help or go to your nearest emergency room if you are feeling suicidal. Various countries and states have numbers you can call if you need someone to talk to. Call 1-800-273-8255 in the U.S. for the National Suicide Hotline. You can also chat anonymously. 

So that’s an update on my situation. My brain is starting to become worthless, so I’m off for now. Please address issues you have with your illness, and know you aren’t alone if you’re depressed or anxious. We can get through it, you can get through it. Your life (my life) OUR LIVES, are worth fighting for.

Also the only thing that’s working on my nausea is medical marijuana. That makes the part-time job hunt harder because I can’t take anything that they drug test for. At the end of the day, I can’t work if I’m up all night dry heaving, so it’s worth it for me to forgo those positions in lieu of the medical treatment that actually works for me.

Neurological Symptoms Getting Worse

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

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?