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:
Email #1: 4/10/12
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.
Email #2: A Response to My Aunt: 4/11/12
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.
Email #3: 4/20/12
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.
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.
Email #5: 5/3/12
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.
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.