I am Evy’s emotional rollercoaster.

My emotional state is in serious turmoil these days. The combination of lack of sleep, nightmares, and anxiety over still not knowing what the heck is going on with me is taking its toll. Unfortunately, this also means I want to do nothing but sleep (which leads to nightmares, tres frustrating), curl up in a ball and cry (totally not practical since I need to work still) and eat. Since I know better the ins and outs of my intestinal crazies these days, I better know how to eat without setting off the gluten-intolerance flareups. That’s both a blessing and a curse. To put it nicely, until I know what the heck  is going on with my immune system, I don’t plan on stepping on a scale because it will only make me feel worse. The good news at this point is that even though I’m a bloaty, gassy, pudgy, hot mess, my clothes are all still fitting. I’ll take that as a win.

Today I found myself tearing up a lot. I did it at work after getting off the phone with the agency. I was so frustrated and angry about the lack of communication in the office and my own fuck up in regards to not getting time cards in on time because of being absent-minded from this health crap that I actually let Josh and Ralph see me cry a bit. I *hate* when people see me cry. I try to pretend I’m stronger than that, but when things get tough, I get emotional. I guess deep down I am just a girl. =P

At this point, it’s pretty clear that it’s not cancer. Now my doctor can’t say that for 100% since you can’t ever really be sure when a diagnosis is still alluding her, but for all intents and purposes, or investigation has moved in another direction. That direction? Autoimmune disorders. Autoimmune disorders in a major way. The two heavy hitters Dr. G is checking out with the most interest are rheumatoid arthritis and lupus. After we ruled out lymphoma, the next most obvious choice was definitely one of these two bad boys.

The amount of overlap in symptoms between lymphoma, RA, and SLE is just ridiculous. It seems that the more research I do, the more I’m reading the same things over and over again – except I’m reading about a different disease each time. There are subtle differences – very subtle – that set them apart. Now, obviously lymphoma is a cancerous process so that’s it’s major defining characteristic. The differences between RA and SLE aren’t as obvious to point to. Seems the pain one is the difference in skin involvement and the level to which the arthritis symptoms flare up in the morning. Since I have heavy skin involvement (you know, since I have all these weird “eczema” issues and this rosacea type redness in the traditional malar pattern) and less of the bilateral and often terrible arthritis every morning, things are leaning the lupus way.

I gave a crap ton of blood to Dr G’s MA on Friday (and man was it a terrible experience [and a story for another time]) in the hope that, if they ran enough tests and checked for enough autoimmune disorders, something would come up. So, here I am keeping my fingers crossed that we find it. Feels funny to hope to find an autoimmune disease lurking inside yourself, but at this point, I just want answers. The sooner I have answers, the sooner I have a diagnosis, the sooner I start some kind of treatment, the sooner I can explain my weird behavior recently to others, the sooner I can get on with my damn life and start to feel like a normal human being again. It’s been a slow going process – losing my “human being-ness” – but I’m at a point now where I hardly recognize me. I just want to be the old me. Couch girl is not a fun person to be around – least of all for the couch girl herself.

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They’re a Tumor. They’re a Tumor. They’re a Tumor.

For those of you in the “know” about Family Guy, you’ll recognize my title there is a play on a sketch they did at one point. I always found the little jingle humorous and, now that I have slightly more knowledge of what’s going on with my lymphatic system, I’m more ready to have a laugh about it. The best way to share my current knowledge of what’s going on with you all is by simply sharing the email I already wrote up for my sister. She asked me to explain it in “non-Latin terms that non-medical people like me could understand,” and that’s what I did.

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Well, the very basic idea is that my 10 or 12 swollen lymph nodes are filled with many numerous small tumors, called lymphatic follicular hyperplasia. At this point, they are not 100% sure what is causing them or if they are cancerous. The surgeon, in the very few minutes he was able to spend with me before having to rush out the door to emergency surgery, informed me that they are about 70 – 75% sure it isn’t a form of lymphoma at this point, but he didn’t want to declare that I’m without it until all the other tests come back.

There is also a small chance that these tumors are being caused by my b-lymphocytes (the immune cells that steal the baddies and bring them back to the follicular region of lymph nodes for processing and destruction) grabbing up and destroying some other type of metastatic cancer. They’ll have to run some tests on those individual cells to determine that though and if anything comes back funny I’ll probably wind up having a full body CT to hunt down the culprit.

Another cancer concern lies around these tumors being idiopathic (or of unknown cause). That in and of itself doesn’t mean I currently have cancer or anything, but, if these tumors don’t get themselves worked out and removed (which would mean the removal of all affected lymph nodes, and that could lead to lymphedema), there is the very likely potential for them to necrotize and that necrotized tissue almost always causes lymphatic cancers. Now, that wouldn’t be until 20 or 30 years down the line, but if I know I can prevent future cancers now, I think I’d like to do that. Ya know? =P

The very most likely scenario, however, is this: many forms of moderate to severe autoimmune disorders first come to a patient’s and their doctor’s awareness when these types of tumors pop up in the lymph nodes through out the body. Since you and mom and dad and so many other family members have or have had some type of autoimmune disorder (thought mostly of the thyroid so far), the likelihood of me developing one has always been extremely high. The two that are most likely for me because of biological and family factors, as well as the fact that I have many of the symptoms of them, are Systemic Lupus Erythematosus or Sarcoidosis. Of those two, I believe SLE is a closer match for me based on the symptoms and my nursing knowledge of it. So, I’m keeping my fingers crossed that that is what has caused this whole mess.

Yes, I think it’s super weird to hope for such a (sometimes) devastating autoimmune disorder, but, the way I see it, it’s by far the very best option of those presented to me. It can never be cured, but they have found many very helpful ways to help prevent and lessen the extent and the length of flare ups with medications in this day and age because it has been well studied and researched.

Now, like I said, there are more tests they’ll be running in the next week that I won’t find out the results of until I see my PCP next Friday. But, at this point, I’m a little more at ease with what I know.

-Evy

I’ve Got Issues

I know I haven’t posted in a very, very, very long time. I’d like to say that all that time was taken up by very good reasons, but that would be a lie. Truth is, I got busy, I made new friends, we moved, I switched to day shift at work, and I put this, and other things, on the back burner. Good news is that, apart from a minor setback in January, when I went gluten-free for health reasons (and I’ll try to post about that later), I’ve managed to keep my previously lost weight off and gotten down to a total of 87 pounds lost. It’s quite the accomplishment for me and, trust me, I’m rather proud of myself. I still have days, like today, when I look in the mirror and still think “Fat! Fat! Fat!” but I’m told by even my skinny and fit older sister that, even at a perfect ideal weight, you never escape those days.

The main reason I’m posting today is unrelated to my weight loss journey, at least mostly unrelated. You see, I’ve been having some very weird health issues and most of the people I talk to this kind of stuff about have heard it all before, but I’m not done talking. I need to get every last thought out or I may well explode. No, seriously.

I’ve exchanged some emails with a small group of family and very close friends because I knew they would want to know, so I plan on posting those here and then expanded further upon what’s been going on since the last one. Here goes:

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Email #1: 4/10/12

Dear all:

I’m emailing you all because you are my family or friends that I feel need to be in the loop of what’s currently going on with me. As some of you may know, since last summer (2011) I’ve been having issues with my lymph nodes swelling with no apparent reason. I brushed it off repeatedly. In late December or early January, I found a swollen, smallish node on the border of my left groin and pelvic region. I didn’t think much of it. About a month or so ago I noticed it had gotten a lot bigger. I still chose to ignore. Then, about 3 weeks ago, I noticed it was really big and was putting pressure on everything around it and making things ache, hurt, tingle, and go numb. I mentioned it to my mom and she was finally able to talk me in to going to see my doctor (hence forth referred to as #1) ASAP.

Fast forward to last Thursday (4/5/12): My regular doctor (#1) was out of town for the week so I had to see one of her associates at the practice. Unfortunately, this meant the new doctor (hence forth referred to as #2) wasn’t up to date on my personality and propensity towards avoiding going to the doctor until I absolutely have to or my baseline. Thus, #2 didn’t seem to take me too seriously. Well, that’s not completely accurate. She seemed like she wanted to take me seriously, but she also made me feel a bit like she thought I was just worried over nothing. I guess she decided she needed a second opinion after feeling the various places I indicated I felt swollen nodes (several in my neck and the big one in my groin) because she implied she didn’t feel them. This other doctor (hence forth referred to as #3) really seemed disinterested and intent on convincing me it was all in my head and convincing #2 I was just some pill seeking junky. Yep, that’s me, a pill seeking junky – you know, since I hate pain pills and avoid taking them unless I’m in serious pain. Anywho, these two doctors felt all the previously pointed out areas, #3 said she didn’t feel anything and then proceeded to try and convince me it was just my hip bone (ask John, he was there) and I was getting seriously frustrated. I don’t think I’ve ever been so close to losing it with a doctor before in my life. I finally got them to acknowledge it was a lump, not my damn hip bone, and a weird one at that but they told me it couldn’t possibly be a lymph node. Why? I’m not sure and they didn’t give any explanation.

Monday (4/9/12), I was sent for a full pelvic CT scan with contrast dye via oral and IV routes. I was informed the results would be available this afternoon or evening at the very earliest. I guess the technician saw something he didn’t like though because mine made it to the top of the radiologist’s stack and I was called by #2 at 9A this morning. She apologized for her reluctance to want to believe it was a lymph node and informed me that it was, in fact, a very large one. She also informed me that there are 5 or 6 others that are too deep to palpitate but are definitely enlarged.

Next Monday (4/16/12) I am scheduled to see my normal primary care doctor (#1), thank god, and have pretty much every blood test known to man run on me to rule out any kind of low-lying systemic infection. I will also receive a referral for a surgeon who will be performing biopsies on these swollen lymph nodes, or at least the huge one for sure.

Having had so many people poke, prod, palpitate, and rub on that large lymph node has definitely taken its toll on me. I’m at a point where my groin and hip are uncomfortable around the clock and my foot and knee are having tingles and numbness. As the lymph node lies in the inguinal tract, it lies over some major nerves of the leg and I’m pretty sure it’s putting pressure on those.

Anywho, I plan to keep you all informed of what’s going on, so please keep an eye out for my emails. Also, any positive thoughts you can send my way would be appreciated.

Thanks, Evy.

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Email #2: A Response to My Aunt: 4/11/12

S,

I believe that CT was the saving grace for those doctors. I can’t imagine what would have happened if they had decided I was “just crazy,” as they were seeming to imply, and I had gotten really sick. I think my persistence may have been the only reason they decided to do it. Ah, well. So is life.

Well, “strangeness” does seem to run in the St. family line. The doctor was rather … impressed (?) by the amount of cancer and weird health issues in our family. I’m really hoping this turns out to be just some bizarre infection and we can knock it mostly out with antibiotics.

I truly appreciate the positive thoughts and prayers. They do mean a great deal to me.

-Evy

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Email #3: 4/20/12

Hey all!

I wanted to let you know that I had my consultation with the surgeon today and he agrees that, at very least, that biggest lymph node needs to be completely removed and thoroughly biopsied. That surgery has been scheduled for Thursday, May 3, first thing in the morning and I will be put under general anesthesia. I have my pre-admission screening scheduled for Friday, April 27 to make sure I’m “fit for surgery.” That won’t be an issue though because I know I am. =P

Anywho, I’m pretty sure I’ll be out of it most of the weekend following the surgery, but I’ll let you know how it went as soon as I’m coherent again.

Thanks, Evy.

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Email #4: A Response to My Sister: 4/28/12

Testing today was pretty routine stuff. They took some more blood, listened to me, asked me tons of questions, instructed me that many of the meds I’m on (including all my vitamins, which is weird to me) have to be stopped a full 72 hours before the surgery… Nothing exciting.

I’m okay. I think nerves are finally settling in though. I remember how awful I felt after the last surgery I had under general anesthesia. I just don’t think it much agrees with me. And, as far as symptoms go, well, they aren’t going away, and I’ve gained a few (namely a cyclical low-grade fever, a dry cough, and persistent dry mouth). All my symptoms could easily mean a recurrence of mono or Hodgkin’s disease. Trying not to think about it too much though.

At this point, I just want to know what’s going on so we can get me treated and I can start feeling better. As more time passes, the symptoms get worse, and I’m just sick and tired of being so exhausted, sweaty, itchy, etc. all the time.

The surgeon and his nurse were very reassuring that, even if it is Hodgkin’s, because I got in fairly quickly after symptoms started (even though I waited for a long time by mom’s standards) and my doctor realized this was an issue worth investigating fast enough, any treatment would have a high likelihood of being very successful. So, that’s some very good news to me.

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Email #5: 5/3/12

Hey all.

It’s Evy here. I guess you could say I’m lucid now because I’m okay to write this email. =P

Anywho, surgery today went well. It took about an hour to an hour and a half from start to finish. This is all gonna be second-hand knowledge as I didn’t speak to the surgeon afterwards myself, but John and mom filled me in.

1. The surgery went really well. The surgeon was able to get out the lymph node he wanted with minimal damage to surrounding structures.

2. He used strictly dissolving sutures and steristrips so I shouldn’t have to go back to have them removed. I will, however, be unable to lift anything weighing more than 10 pounds for a week and then I’ll have to take a “watch and see” approach for another week after that. Two weeks from today, I’ll have my follow-up visit with him to make sure I’ve healed up how he likes and should be completely cleared for normal life.

3. I didn’t have to have an ET tube placed during surgery even though I went under full general anesthesia. After the anesthesiologist heard about my last experience, he decided to do an LNP style anesthesia instead since, although you are completely out, you can still breath on your own. He told me that he’d only use an ET tube if I had a reaction and, thankfully, I didn’t. This is great because those ET tubes really mess up my asthma and not having to use one means I feel much better this time around.

4. My surgical site is seriously painful and I’m having quite a bit of trouble walking, moving around, and bending that area at all, but I expected that so I’m okay with it.

5. I’m on round the clock (every 4 hours) percocet for the next few days and then tramadol after that until the pain and inflammation has decreased enough. Because of the percocet’s icky side effect of constipation and the fact that they don’t want me to strain and accidentally pop out these stitches, I’ve also been given a script for colace – a stool softener – and will need to take that until the wound is completely healed.

6. They only needed to take one lymph node out because it was definitely big enough for biopsy on its own. The lymph node came out to be somewhere between a walnut and an apricot in size. The area palpable from the outside was really “just the tip of the iceberg.” Half of that bad boy was sent to the pathologist and the other half to an infectious disease speciallist. Now we just wait for the results from them.

7. I have a follow-up visit with my primary doc on May 18th and I’m supposed to schedule a follow-up with the surgeon for the 17th or after. Unless the results come back that I’m actively dying or something, that should be when I hear what’s going on too. [Note: I really don’t think I’m actively dying. I mean, even if it is Hodgkin’s disease, which is a mild cancer, I won’t be actively dying. It is *very* treatable and has a 98%+ survival rate even in stage 4.]

Much love, everyone.

-Evy

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Since that last email, not too much has happened really. The healing process had some serious ups and downs. It took me longer than I had hoped to feel better so I wound up having to take an extra day off work. I went back yesterday and notice that, at around the 6-hours in mark, I do start to have discomfort and pain. Today after work I ran by the mall and was super uncomfortable by the time I flopped into my car and drove home. That was my own doing for pushing myself too hard though, I guess.

So, here’s what’s been bothering me: Today marks the 5th day since surgery. I was told to expect results some time between 5 and 10 business days. I’m anxious. Every time my phone rings, I feel my heart jump and lurch hoping it’s news. I have a feeling this is gonna go on until I know. There are only a few options that are at the forefront of my mind: hodgkin’s disease, non-hodgkin’s lymphoma, some unknown and very weird infection that will probably require heavy doses of medications. There is always the possibility that I am just a freak of nature and there is absolutely nothing wrong, but the likelihood of that is low. And, to be honest, I think I might actually be a little pissed if that were the case. That’s not to say I’m wishing some major illness upon myself, but if I went through all these expensive tests and surgery just to find that out, I would honestly be upset to have to pay a $3000 medical bill. If something more serious came back, well I wouldn’t be happy about it, but I could stomach that medical bill knowing that all treatment from there on out should be covered completely by my insurance. Yeah, it’s pretty sad that that thought has crossed my mind. I’ve discussed this with John and my mom and they both understand what I mean but I get the feeling most people would not. I wouldn’t blame them either. I’m sure if someone else came to me and said those kinds of things I’d think they were a little crazy too.

So, that’s been bogging me down for a while now. Now that I’ve sent it out into cyber space, maybe I’ll sleep better tonight.