Ambien Zombie

I feel like I sort of left things hanging with the post before the last one, so I should at least write a follow-up to that. While I was driving my daughter home from gymnastics camp just a few minutes ago, I was thinking of when we moved here six years ago, and were going through a very worrisome time due to her significant developmental delays. For the first three years of her life, we took numerous trips to various specialists, including a pediatric cardiologist. (Talk about a depressing waiting room.) A while ago, I was trying to recall the specific details of those visits, so of course I consulted my blog. Nothing. Nothing except a vague reference to the fact that I had gone to the pediatric cardiologist and didn't feel like writing about it. At the time, I suppose I figured I would rally and write about it eventually, but I never did. Now I regret that. I want that time back. I want the details; I want to remember exactly what I was feeling at the time, other than distraught. So I shall sally forth and try to write down as many details as I can now, because someday I will want them.

To make a long story short: It looks as if the surgery I discussed with Dr. T on 7/15 is a go. I am planning on it, with cautious optimism.

To make a short story long: Remember how I have not been able to sleep? How I went to see my PCP to get a prescription for Ambien? Well, apparently my anxiety levels are so high that even Ambien doesn't do the trick. It definitely helps, but even with a melatonin + Ambien cocktail + scarf over my eyes + earplugs, I'm lucky to get five hours of uninterrupted sleep. And once I wake up from whatever sleep the aforementioned give me, it's all over. There is no going back to sleep for any significant amount of time - just dozing for maybe half an hour at a time or so.

One night last week, I woke up around 1 AM sweating and itching and was convinced I was experiencing early onset menopause, but that's a different story. The next night, I didn't want to mess around, so I drank a huge glass of wine with my Ambien and fell asleep while watching Harry Potter with my kids. I remember waking up at the end to go to the bathroom and help my husband get the kids to bed, going to sleep, and waking up with a horrible Ambien + wine hangover. I staggered into the office to check my e-mail before the kids got up. I had an e-mail from Dr. T. It said:

Waning,

I am confident that we can make the surgery happen. I am a very safe surgeon and do a very thorough preoperative evaluation. I want to make certain that we do this for you without causing any problems and I definitely don't want you to have another blood clot.

Rest assured. 

Ty Tahm, MD

Confused, I scrolled down. To my horror, I discovered that somehow, in the middle of the night, I had sent him a horrible, panicky, anxiety-filled e-mail that is so embarrassing I can't even paste its contents here. I pretty much told him if he was going to back out on me, to tell me now. I needed to know.

Holy shit.

I promptly Googled 'side effects of Ambien' and came across this article, which made me feel a little better. So Ambien really can make you do crazy shit, apparently. At least I didn't kill anyone, just HUMILIATED myself. Although, oddly enough, my e-mail was extremely coherent. Everything I said was certainly what was on my mind, it just needed editing to not be so overbearingly forward and presumptuous. I even told Dr. T about all the reading I had been doing on PubMed about hemoglobin E, including: There do not seem to be any clinical issues being heterozygous E or even homozygous EE, unless in combination with another mutation. The concern you spoke to me about was with patients whose spleens had been removed, but in reading through the literature, it seems those patients had splenomegaly because they had hbE + another abnormal hemoglobin.

OMGIWANTTODIIIIIIIEEEEEEEEE!!!

I didn't even know splenomegaly was in my vocabulary. Apparently it's a real thing, though. See? http://www.mayoclinic.org/diseases-conditions/enlarged-spleen/basics/definition/con-20029324

Let me just repeat: OMGIWANTTODIIIIIIIEEEEEEEEE!!!

I replied:

Dr. Tahm,

Thank you for the reassurance. I appreciate your thoroughness. I am always trying to prepare myself for the worst case scenario (and there have been several over the past two months). And sorry for the panicky e-mail... I have been taking Ambien so I can sleep after two months of not really sleeping, and apparently it makes me write middle-of-the-night crazy e-mails. Yikes.  

If there were a sheepish emoticon, I would have added that, but honestly, what else can you do?

But, when all is said and done, the reassurance is good. I just pray the next time I see Dr. T, I'll be unconscious already. So I guess I should change that to: I just pray the next time Dr. T sees me, I'll be unconscious already.

Can this nightmare be over already?! Oh wait, you have to sleep to have nightmares. This is real. This. is. real. Unbelievably, horribly real.

Why do I write here?

It has been a while since I've written anything. Part of that is because I don't have a lot to report, and the other part is that I don't know what to write. Which is weird. If you know me, you know my fingers are rarely at a loss for words.

Writing has always been a huge part of my life. I've kept a journal since, like, forever ago. I've always seen blogging, along with various other Internet ventures, as a natural, 21st-century extension of my journaling. Writing in my diary as an angst-filled fifth grader in 1985 helped to relieve anxiety, and blogging 20 years later in 2005 served that same purpose. Somewhere along the road, I realized that blogging is different than writing in a journal, if there are people who actually want to read your innermost thoughts about how stupid it is that your boss hates yellow so much that you can't even use standard Post-It notes at work. And apparently there are. And I have no regrets about this whatsoever, because I've met some really cool people along the way, people I've never met in real life, but whom I consider to be very, very good friends. People who probably know me way better than 90% of the people I see on a daily basis, people who cared about me long before I spent four months on bed rest, before I developed debilitating hip pain, before I had cancer. But still, knowing that people are reading what you are writing changes the nature of the writing.

Thus, I suddenly find blogging here to be somewhat difficult. I originally started to write here because I was bored, and because, being an avid blog reader, I had read a number of other blogs that were useful to me as I dealt with excruciating hip pain at a relatively young age. As I deal with cancer, also at a relatively young age, I find reading blogs to be even more important. And I've read a lot of blogs lately, perhaps too many. In the world of cancer, or even just Unfortunate Medical Conditions, there seem to be two types of blogs: those written to inform others of their status, and those written as therapy. But it is an ironic situation: it is the raw emotion of the latter that draws me in, the blogs that are written as if there is no expectation that anyone is actually reading them. Information about side effects, risks, recovery time, and other logistics is easy to come by, but knowing you aren't alone in being unable to express your grief over losing a breast is why I read.

And it is also why I write - to get all of the things out of me that I don't tell people in a normal conversation. To foster this part of me that is for the most part not visible in my everyday interactions. Most of all, I write for myself, either as therapy, or so I can have a record of my experiences. I write to inform, but mostly to inform myself. Even reading back through what I wrote a few months ago is like reading something written by another person; I only know I was at a particular place at a particular time in a particular state of mind because I know those words came from me.

But yet... here you are, reading this. It would be a lie for me to say writing this is all about me. I'm writing this for you, too. There are a handful of you who only know this side of me (my 'Internet friends'), there are a handful of you who know or at least knew me in real life, who want a little more detail than I share on Facebook, and then there are a handful of random folks from all over the world, at least according to Blogger stats. I have no idea why you are here, or if you are here to stay, or what. And so I find myself at a loss for words. Will you tire of my self-absorption and self-pity? Will sharing what I'm really thinking make you see me differently, lose respect for me? Will you get bored if I share the minutia of my e-mail interactions with my doctors? There is so much to write, and yet nothing at all.

So while I contemplate what I'm doing here and what I should write about next, I'll finish with a story.

A few evenings ago, I went to the grocery store. I saw a man get out of a taxi cab with a suitcase and stagger halfway across the parking lot. He was in my way, and many others' ways, only he didn't seem to care too much. He didn't seem to know what he was doing or where he was going. He didn't seem drunk, though, just dazed - as if he himself couldn't believe he had come to be the center of this parking lot spectacle, yet resigned to the fact that he was. It was quite a sight. People drove around him with puzzled looks on their faces, ultimately deciding to pretend he wasn't there. He eventually made his way across the parking lot and sat down on the cement base around a light pole, rubbing his eyes. After a few minutes the cab that he came in left. It made me want to cry. Then again, a lot of things make me want to cry these days.

When I was a kid, probably about 10, I read a Dear Abby column that has had a lasting impact on me. Someone had written a letter complaining about the fact that the woman in front of her at the grocery store was using food stamps, but had on a diamond ring, then went and got into a fancy car. Abby's response was to try not to be angry, because we have no idea what circumstances led to this woman needing food stamps, then rattled off a couple of possibilities. I don't remember the exact details, but it was something like this: Maybe she was newly divorced and waiting for alimony. Maybe she didn't want to sell the ring because it was a family heirloom. Maybe the diamonds weren't even real. Maybe she couldn't sell the car because she owed more on it than it was worth. Maybe she borrowed the car from a friend. Maybe her husband just died, and parting with the ring would be too much. The point is there are practically endless scenarios. To this day, whenever I feel myself getting super judge-y - and trust me, it happens a lot - I think, what would Dear Abby say? and try to make up a story to justify the actions of the person I'm judging. Maybe she's having a really bad day because she just found out she has breast cancer.

I do this a lot, make up stories about other people. I'm not a naturally compassionate or empathetic person, so the stories help me. I could think up a zillion stories that might lead this poor, disoriented man to his current state, and knew I wanted to do something for him. I would have given him some money, but I didn't have much cash, and thought Hey, here's $2, go buy yourself half of a latte at Starbucks wouldn't exactly be helpful. I figured he would eventually make his way into the store, where I could offer to pay for his food for him if I had the chance, or... something. But when I came out of the store, he was still sitting in the same place, looking a number of different things, but most of all, tired. People continued walking past him as if he were not there. Are we really so desensitized to others' suffering that we don't notice? Or do we not know what to say or do, so we say and do nothing? I'm certainly guilty of the latter. It's like that teenage girl who survived the plane crash in Washington, then spent two days hiking through rugged terrain to get to the highway. Once she got to the highway, she tried to flag down cars, but no one would stop. I imagine she was quite a sight - burned, dehydrated, dirty, traumatized, hysterical. I probably wouldn't have stopped either. Only after reading about it on CNN would I have realized, Holy shit, I drove right past that girl and did nothing.

Eventually, I built up some courage and drove up next to this man and asked him if he needed help. He didn't say anything, but his eyes grew wide, as if he couldn't believe someone was talking to him. And let's be honest, what can someone like me really do to help him? We both sat there stupidly, staring at each other. I had gotten cash in the grocery store, so I asked, 'Can I give you this?' and held out a $20 bill. He gave me a huge smile, and while accepting the bill declared, 'God bless you!' I wish I could have done more, but not being trained in social work, I slunk away awkwardly while he smiled and held a thumbs up and bowed in thanks to me as I drove off.

Other than my cancer-induced, sleep-deprived super emo state, I'm not sure why I felt such a connection with this guy. I see panhandlers every day, and live in a neighborhood where homeless and other types of desperate people roam the alley and go through my trash and recycling on a daily basis. But then I read this post on one of my favorite cancer blogs, and it became clearer to me. We all suffer for various reasons, and we all deal with our suffering in different ways. For those of us who tend not to be outwardly emotional, it is hard to let people know that absence of tears does not mean absence of grief. We don't want our grieving to become invisible, yet we don't know how to share it with others, and we dare not, because we know others aren't equipped to handle it. We do not want to burden ourselves knowing that we have burdened others with something they don't know how to react to; we don't want to make those we care about feel bad that they cannot help us.

I had no idea how to help this man in the parking lot, and was scared to try, but I could not let his grief become invisible. Who knows what this man's story is? Maybe he was once a typical man with a job and a house in the suburbs and a wife and kids. Maybe he lost all of his money in a financial scandal, then drank himself into oblivion, only to wake up on the streets to find out his wife had taken the kids away and he wasn't allowed to contact them. Or maybe he lost a kid in a horrific accident and it made him crazy. Maybe someone he loved very much died a painful death from a terrible disease and he saw no reason to keep living afterward, only didn't have it within himself to end his own life. Maybe he once read the same Dear Abby column that I did when I was a kid, while he was reading the paper over his morning coffee before heading off to his job. Maybe as I trying to get away as quickly as possible after giving him money, without looking him in the eye, he was thinking to himself, Maybe that woman is feeling generous today because she, too, is grieving in her own way.

Wined and Dined

A common complaint you hear from people is that they feel like their surgeons aren't nearly as attentive to them post-surgery as they were pre-surgery. The surgeons tell them how great and how life-changing the surgery will be, then afterwards, when the patients are disappointed with the results, they are like, 'Oh, oops, a lot of times it doesn't work! Read the fine print!' In other words, people feel wined and dined, then discarded. Of course, there are always two sides to every story, just sayin'. This seems to be a not-rare (even if not super common) thing in orthopedics; I'm sure we all know someone who had a semi-elective surgery for an orthopedic condition that didn't really do anything. (I say semi-elective because as someone who suffers from a painful orthopedic condition, I understand that just because something won't kill you, it's not really 'elective' if you want to give yourself a chance of continuing to live a normal life.)

Although I have little experience with plastic surgeons, they seem like they might be a wine you and dine you group of individuals. I've always been wary of plastic surgeons, although I now realize that many of them do much more noble things than just cosmetic surgeries. Many of them reconstruct people's faces after horrific accidents, many treat patients with severe burns, and many treat cancer patients. Technically, breast reconstruction after a mastectomy is an elective surgery, even though is far from the same thing as an elective breast augmentation, IMO.

I'm starting to worry that I've been wined and dined by Dr. T. I mean, I don't feel purposely deceived or anything. This wouldn't be logical considering it was just dumb luck that got me face time with Dr. T in the first place, and he had about 15 minutes to review my case before I saw him. It's just that maybe he has one of those magnetic personalities that makes a person a successful winer and diner, one that sucks people in immediately, whether intentional or not. Being in academia, I'm constantly told that students decide within the first five minutes of the first class whether or not they like you. Or is it two minutes? Or 30 seconds? Whatever. It's not a long time. But the point is, despite the fact that I'm sure someone got a doctorate in education for figuring this out, there is probably some truth to it. LOL.

Needless to say, as time passes and my anxiety levels rise, I'm feeling less love toward Dr. T, and more distrust. I don't know if this is rational or not; hopefully not. I sent him an angst-y e-mail on Friday about what, if anything, I needed to do to arrange to see this hematologist colleague of his, and to be fair, he did e-mail me back on Saturday morning to let me know that they would call me. And to be fair, they did call me today. And they told me the first appointment they had was August 27th. Ummm, okay, that's... not helpful. But apparently Dr. T just submitted a referral for a 'routine consult.' So basically I threw a hissy fit and told the woman I had breast cancer and was scheduled for a mastectomy August 26th, and got myself an appointment on August 10th. But still, I'm feeling somewhat annoyed and wary that Dr. T is the one who is making me see this guy - and it can't be just any hematologist, but it has to be this supposedly Top Anticoagulant Hematologist - but yet I'm the one having to throw a hissy fit to get an early enough appointment. We seem to moving at the pace of an elective cosmetic surgery, not a patient has cancer and had one positive margin after the first surgery, and three positive margins a month later, so we need to GET THIS SHIT OUT OF HER ASAP surgery. Yes, the reconstruction is elective, but the mastectomy is mandatory. So either way, the breast has to be amputated on August 26th, and the surgeons themselves are the ones telling me that if I'm going to do reconstruction, I'll be much better off doing it at the time of the mastectomy. As Dr. L would say, argggg and poop.

I'm also a little disconcerted about this late date considering I really cannot do any appointments August 12-18, and what if this guy wants to do more tests? Like... is he magically going to look at me and tell me I'm either okay or not okay? Or have he and Dr. T already decided I'm NOT okay to do this surgery, and Dr. T doesn't want to tell me, so he is making his colleague tell me? (This is what I fear the most.) What exactly am I supposed to be discussing with this guy? A little guidance might be nice. As Dr. Evil would say:

confoundedinterest.wordpress.com

At any rate, I've decided to be proactive, because for me, planning helps alleviate stress. If I really do have a clotting disorder, I want to know sooner rather than later. Definitely not just a few days before surgery, at which point I have no idea what I'd do. If Dr. T feels like it is a real possibility that I can't do this type of reconstruction, I want to know NOW. Even if it's just something like a 10 or 20% chance, I want to know. I at least want to know what he is thinking, even if it is bad. I am okay with bad, as long as it's not out of the blue and completely unexpected. So I called Dr. A, my PCP, today and requested to have my blood tested for clotting disorders. We actually talked about this a while ago, before I knew I had cancer, just because this is something you should know about even if you don't have cancer. I couldn't do it while I was taking Xarelto, though, and I think he said I needed to be off Xarelto for a month before we could do the test? Anyway, I've been off Xarelto for over a month, and figure this is one thing I can take care of immediately, with my PCP. After some ado, I got an appointment to go in on Wednesday for a blood draw. 

I also e-mailed Dr. L over the weekend about whether it would really be possible for her to do routine post-mastectomy care for me, and what, if anything, I would need to do to arrange for this to happen. I haven't heard back from her, so I guess we will see if she is a winer and diner, too! All in all, I'm feeling extremely angst-y and somewhat disillusioned. I guess one thing that's becoming really clear right now is that this is going to be an adventure until the bitter end. Maybe I'll talk to my PCP about the anti-anxiety meds after all.

Emergency Room (for my computer)

Today was not a good day. Even in a normal, healthy, cancerless mode, I'm an emotional basketcase, so the ups and downs of all of this are practically killing me.

The day started out in typical fashion with me waking up, getting coffee, and attempting to log onto my computer, only to discover that it was on the fritz. I won't bore you with the technical details, but basically the screen was blinking incessantly, to the extent that I couldn't even shut the computer off to restart it to see if it was a fluke. I had to actually turn it off by using the power button (imagine that), but that didn't help. After three restarts, my computer was still acting like a bipolar in manic mode. So after getting my daughter dropped off at summer camp and my son dropped off at daycare, I went up to work and went by the IT department on my way to my office. The way my computer was behaving screamed VIRUS to me, so I figured it might be a quick fix. Except it wasn't. And there was no fixing to be done. (Now is a good time to let you know that I am basically computer illiterate, so if I say shit that doesn't make sense, I apologize.)

Three hours later, I left with a computer that only works in safe mode (but hey, I can still blog from it!) and a prescription for a new computer. Three hours. And I sat there the whole time and watched the guy work for three hours straight, so he was really working on it for three hours. It turns out the tech was one of my former students, so maybe that's why my computer got all-star treatment, but hey, that's better than my computer getting on the fast track to organ donation, because I have plenty of former students who would have gone that route. LOL. The weird thing is that I don't use our tech support very much, so I wasn't even sure if they even fix personal computers. I mean, they should, because I use my personal computer for work 90% of the time I'm using it, and the only reason I don't pursue getting a laptop through the university is because then I would worry about blogging from it. And, when I come out with my best-selling book about breast cancer, bad hips, and DVT, I don't want the university to have any rights to the millions of dollars I am going to make off of it, hahaha.

I was kind of surprised that when I took my computer in, they never asked me to fill out any paperwork or verify that I was indeed part of the university or anything. I mean, heck, I could have just wandered in off the street, but I guess they knew who I was. I realized this later, when I received a couple e-mails through my university e-mail, detailing the condition of my computer and asking me to fill out a survey about the service they had provided, even though I never filled out any paperwork or anything. Ummmm, creepy? Or good? The creepy thing is that the login for my computer is my hotmail account, and every time the tech had to reboot my computer, which was many times over the course of three hours, he had to ask me to re-log in. Eventually I just gave him my password so he could do it himself. I mean geez. But then tonight, I got paranoid and Googled myself based my hotmail account... and yeah. Let me just say that if you have a public blog, and at one point I left a comment about drinking too much or how ultrasounds of unborn babies are creepy, I may have deleted those comments. Don't take it personally.

At any rate, since it was a personal computer, I wasn't allowed to leave it and come back later. (Bureaucracy, gotta love it.) So I stayed. And of course, I had no idea it would be three hours. I include this detail because it was actually sort of interesting to watch the IT help desk in action; it was much like watching a medical team in action, only with much less at stake. I can attest to the fact that the techs really did try very hard to save my computer, and these techs were quite competent and knowledgeable people. IT help, sort of like medicine, is pretty hit or miss. I know that a lot of tech-y types live by the mantra of Your failure to plan does not constitute an emergency on my part, which I get. Really, I do. At the same time, for faculty at a university, there is tremendous pressure to use technology in our teaching, and many of us are not trained in this sort of thing, nor do we receive regular opportunities for training in this sort of thing (though it is getting better). So our emergencies are often not our own failure to plan, but failure of the system to make sure we don't have emergencies in the first place, by educating us. So yeah, if I were computer literate, I wouldn't have these emergencies. But then half of you wouldn't have a job, the same way probably half of health care workers in emergency medicine wouldn't have jobs if people received more regular care for their conditions. So deal with it! And fortunately, they did, because I was most definitely not in the mood for any shit today. 

Anyway, apparently the graphics driver on my computer is dying. I think it has been faulty from the get-go, but that is a different story. The tech/my former student was very apologetic in telling me that it was a fixable condition, but that I would probably be better off just buying a new computer. So around 12:30, I finally headed up to my office to water my plants, get files off my work computer, and re-connect with some of my colleagues. (Interestingly, one of them just had surgery to fix a torn labrum.) At this point, I am planning to teach my pre-term class, so that is good news, I think.

Around 2:30, I left to head off to Best Buy to get a new computer. This really isn't the way I had planned for my day to unfold, and dealing with the dead computer added a whole dimension of stress to my life that I realize probably sounds trivial, but was still RIDICULOUSLY ANNOYING. I'm sure you can all relate to the stressfulness of a dead/dying computer, but it was even more ridiculously annoying considering all of the other technology fails I've had in the past month, which I have not written about because I really try to keep my bitching to a minimum, and reading about washers and phones that don't work is some boring shit. As I texted a friend, if it is appliances that keep dying on me, I guess I should be happy with that. But at the same time, I sort of feel like, geez, could I catch a fucking break?! Yes, I know it could be much worse, but it could also be better!

Around 4:30, I was still messing around with various laptops in Best Buy, and trying to eke out information from the ridiculously unhelpful 'customer service' guys. I had been texting back and forth with a friend I was thinking of hooking up with this afternoon, before my computer emergency, and with my husband, about dinner plans, and whether he could pick the kids up. So when my phone rang right after I'd finally managed to get some real help, I figured it was either my friend or my husband, only it wasn't, it was Dr. T. Even though I knew it was him, because I programmed him into my cell phone after our chat on Monday, I must have sounded really pissy when I answered, because after asking for Waning (he remembered I don't like to go by Ms. Moon), he said, 'I'm sorry to bother you.' Haha, yes, how inconvenient that you called me! 

Let me just say that Best Buy is not the greatest place to have a Cancer Conversation, and especially not after you've just expressed annoyance that after over an hour, no one is really helping you, so someone finally does, and then your cell phone rings, and you act all high and mighty and say, 'Sorry, but this is really important.' It was so bad that at one point I apologized to Dr. T, saying that I was at the store buying a new computer, and it was really loud. So then, because he is awesome, he asked me what type of computer I was buying, and I told him a Lenovo, to which he responded Oh, in a disappointed voice, sort of as if he knew something I didn't. So then I was like Are they bad?! Because I haven't bought it yet! (and I've never had one before, but I have had a Dell, HP, and Toshiba, all of which sucked) and he was like, No! I just really like Macs. So I told him I had tried to be a Mac lover, but even after personal tutoring and group therapy, I hate Macs, and he was like oh, okay. LOL. I guess it's like implants; it's a personal preference. :) (And, by the way, I'm kidding about group therapy.)

Anyway. I think I heard/understood/absorbed about 50% of what he told me, but the bottom line is that he's not okay proceeding with this surgery until I get my blood completely checked out, by a hematologist of his choosing - 'one of the best anti-coagulant hematologists there is.' As he said, 'I just really don't want you to get another blood clot.' Dr. T said he had been e-mailing back and forth with his colleague about my case and that the final conclusion was that I need to have a full work up, but 'I think we can do this before your surgery.' I think. Not, We can do it, like he said at my first appointment with him. Sigh. And, of course, there's always the 'What if?' factor. If I'm okay, and I don't have a clotting disorder or any other factor that puts me more at risk than average, he thinks we can get an all-clear before August 26th. But what if I don't get an all-clear? What then? We didn't discuss this. 

And again, I'm grateful he is being thorough, and I have to admit that I am curious, after all these years, to get a more precise explanation of my condition and its possible significance. As Dr. T told me, 'I'm just uncomfortable that you got this diagnosis with no details.' Honestly, it's something that has been given so little attention throughout the years that I almost stopped putting it down when I filled out medical history forms (especially since there is no specific question about it; I have to put it in 'other'). In fact, I could have easily forgotten about it or convinced myself that it was something that I had made up, except that when my son was born, someone (can't remember who) told me, 'We discovered he has something called hemoglobin E.' That person was about to explain to me what hemoglobin E was when I said I knew what it was because I had it. And that was that.

Of course, I don't want to have a blood clot during this surgery. If I did, the best case scenario would be that the flap transplant wouldn't work, and it would all be a waste. The worst case scenario would be that I have a pulmonary embolism or stroke, and become a brain-dead vegetable. Or I could die. But the former would be worse, in my opinion. So I appreciate the precautions. (On a side note, I wonder how much plastic surgeons pay for malpractice insurance. I bet it's a lot.) However, now I am at a point where the fact that this might not be possible for me is a reality, and UGH, that is just a low I cannot handle right now, especially not after the high I've been on. 

So while I'm still praying for the best, I'm not feeling as hopeful as I was earlier in the week. And one way or another, these next five weeks are not going to play out as I planned, and will be filled with a lot of uncertainty. If it all works out in the end, it will be okay, but if it doesn't, well... I don't even want to go there. 

Save the Date

August 26th.

Just as I was deciding that today's entry would be about how I am BURSTING with impatience, I got a phone call from UH telling me that they were finally able to schedule my mastectomy. For August 26th. WTF?! That is sooooo long to wait! And now, even though I have a date, I am still BURSTING with impatience! And I do not want to sound ungrateful, but Jesus, that is a long time to wait.

The guy who called me was very apologetic and said he understood it was a long time to wait, but 'scheduling three surgeons is difficult,' and this was truly the earliest they could do it unless there is a cancellation. And I'm guessing the cancellation rate for cancer-related and/or reconstructive surgery isn't that high. UGH!

But, I'm going to try to look at the positive side of this. I mean, really, despite my impatience, I'm not exactly dying to have my boob cut off. So in reality, the only negative thing is that I am BURSTING with impatience and want this over with. Also, it changes the tentative plans I had made with my department, which were greatly helping my angst. Now we have to revise all those plans, which will not help my angst. I'll get over it, though.

The positives:

1. I was scheduled to teach a pre-term one-week intensive course August 12-18 that I didn't think I would be able to teach, but that I may be able to now. I'm still working this out with my Chair, who already has a commitment from someone to step in. Honestly, if I could teach this course, it would be a good distraction, and give me something to do for a few weeks. It has been so long since I've taught it - I couldn't teach it last fall because of my hip/DVT issues - that I'd need at least a solid week of prep time. I think this would be good for me in that it would give me something to do other than read blogs about breast cancer all day. Because I have summers off, my summer has been consumed by cancer, which is not a good thing. 
2. Regardless, work-wise, this gives me time to get my shit together pre-mastectomy, so that when I return mid-semester, I'm not scrambling.
3. It gives me over a month to try to gain some weight. Of course, it also gives me a month to lose weight. Unfortunately, I am a person who loses, not gains, weight when I am stressed. I think I wrote earlier that the only positive thing about my diagnosis is that I stressed off about five pounds in the first few weeks. LOL. I will need to actually formulate a high-calorie diet plan and stick to it. While I never really worry about my weight, I'm not a tiny person. I do actually watch what I eat to maintain a weight around my ideal. I've been frustrated over the past year about not being able to walk a lot due to my hip pain, and the weight gain that has accompanied this loss of function, so I know I can gain weight. The key will be not just eating crap all the time - I still need to stick to eating a balanced diet and stay as active as I can, but I'll try to see planning out a high-calorie but nutritious diet as a fun challenge, knowing that I am feeding my future boob.
4. It gives me over a month to complete many of the projects that I've been wanting to do. Due to the nature of my job, I really don't get any major projects done during the school year, and I tend to save them all up for my long breaks. Obviously my major projects (most of which are of the home improvement variety) did not get done this summer. But now I have the time and the motivation for a few of them. At the top of the list is painting. Our house was a foreclosure, then was 'flipped,' so the entire house is generic, 'realtor' beige, and after three years, it drives. me. crazy. The only room I've painted is my daughter's (twice, actually), and I've been wanting to paint my son's. However, my own bedroom is now at the top of the list, as I figure I'll be spending a lot of time in it post-mastectomy, and really don't want to have to stare at such boring brown walls. It's definitely time for a face lift.
5. On a smaller scale, it also gives me time to REALLY prepare and get organized. I can do a bunch of cooking and freeze a bunch of meals, I can go back-to-school shopping with my daughter, I can buy birthday presents for my son (whose birthday is 8/22), I can sew pockets into my shirts so I don't have to spend $60 for a post-mastectomy shirt. Etc. Etc. Etc.
6. It gives me time to put together and execute my mastectomy 'bucket list' - for lack of a better term. Hopefully it's not a true bucket list, lol, but I do have a few overly indulgent, upper class extravagant things I want to do, just because I can (like getting a pedicure, which I've never had before!).
7. It gives me time to get some other affairs in order, so to speak. Not to be morbid, but I want to redo my will as well as do an advance directive. These are things everyone should do, even if they don't have cancer. After all, anyone can die at any time. My husband and I did do an official will after my daughter was born, but we haven't done one since my son was born, and it's just... a good idea. We had been talking about doing it even before all of this. And even without this, I'd want an advance directive. I think everyone in my life knows I do not wish to be kept alive if I am a brain-dead vegetable, but then again, you never know how difficult it might be to honor this if the time actually comes. Again, I'm not trying to be morbid; anyone can become a brain-dead vegetable at any time, but let's face it, with this complicated surgery, it does increase those odds significantly.
8. Before all of this bullshit, I had three major professional goals for myself over the summer: take a physiology course, become a registered EMT, and take the GRE. I'm toying with the idea of trying to do one of these before August 26th (one of the latter two), but I don't want to put too much pressure on myself, especially if #1 comes to fruition. This is more like a Plan B, if it turns out I don't teach my week-long course and am driving myself crazy with my incessant blog reading. All of these relate to my future professional goals, but needless to say, a new job/career change isn't at the top of my list right at the moment, especially considering how great my department has been about everything. I've already completed an EMT course and passed my practicals (barely), but to become a registered EMT in my state, I need to pass the national registry exam. This isn't a really hard thing, just one of those things you really do have to study for. If I took it tomorrow without reviewing, it's very likely I would fail. It's sort of the same situation with the GRE; I could take it tomorrow and do okay, but I'd do much, much better if I studied a little. It has been a long, long time since I've done standardized-test math (or really any math), and it never hurts to review the meaning of some of those esoteric terms no one ever uses. (Vocabulary is not my strong suit. I have friends who speak English as a third language who scored higher on the GRE English section than I did.)

So there you have it. 

Now, some prayers. These will appear at random times, because I decided it was too stressful and way too Type A to box myself into a set blog prayer schedule.

Blessings

• I'm very grateful to have a set date for my mastectomy. Even though it's not as early as I had hoped for, it's a relief to have a date I can plan around. I am a planner, and planning things helps relieve my anxiety. I used to be an avid listener of Dr. Laura (don't judge me... even though she would, lol), and whenever anyone referred to a fiancée or fiancé, the first thing she would ask is, 'Do you have a ring and a date?' because without a ring and a date, 'engagement' is non-committal. So while I don't have a ring, it is a blessing to have a date. :)
• Most of all, I'm grateful that this is not an urgent, life-or-death surgery. If you need a mastectomy, and doctors are rearranging their schedules and moving heaven and earth to fit you in ASAP, it means you aren't in good shape. So I'm thankful to have a prognosis that doctors don't see as something that needs to be done immediately. 

Hopes

• I still haven't heard back from Dr. T regarding my hemoglobin E and DVT issues. I'm praying very hard (pretty much on an hourly basis) that I am, in fact, a good candidate for DIEP reconstruction. But if not, I pray for the strength to handle what would be a definite low. 
• As crazy as it sounds, I'm praying for the health and safety of all of my surgeons. (That sounds like something a super religious person does, right?) Five weeks is a really long time, and even though I put my doctors on a pedestal next to God, they are real people despite having Godlike powers. I know Dr. T is going out of town the first week in August to go to a soccer tournament with his son. He could be in a plane crash or a car accident, or his son could be gravely injured and he might have to stay with him in the hospital. He could get sick. He could discover that he himself has cancer. So I pray everyone who is going to do this surgery, which is the answer to my own prayers, will remain safe and healthy and able to do this surgery to the best of their ability when the long-awaited day finally comes. 
• I pray that I will continue to be uplifted by the amazing support I've received from my friends. I love you all. :)

Let the countdown begin. 

Dr. T and Hemoglobin E

Despite the fact that for me, writing is my Xanax, I usually try to limit myself to, like, one post a day. However, mourning the loss of a complete stranger merits a post of its own, separate from the logistics of my own impending mastectomy. Ever since my awesome encounter with Dr. T last week, I've been waiting for University Hospital to call me with a definite date for my surgery, and have been getting reeeeaaaaally impatient. If cancer doesn't do it, the waiting. will. kill. you.

In a previous post, I wrote about meeting with Dr. L, and how she had been surprised that Dr. T hadn't more seriously considered a nipple-sparing mastectomy. I mentioned that we had discussed it, but that I hadn't really retained any of the details. So, on Saturday, curiosity got the best of me, and I e-mailed Dr. T through his personal e-mail, which he had given me, though I still felt a little bad about it. Among other things, I wrote:

I saw my [in town] surgeon (who did my lumpectomy and re-excision) on Thursday. She inquired about doing a nipple-sparing mastectomy or at least an areola-preserving surgery, and I told her you said that would make the reconstruction more complicated. I know you explained it, but I don't think I quite caught it. (A lot of details seem to go in one ear and right out the other these days.) Of course, the most important thing to me is to give the overall reconstruction the best chance of success and good results, and if sparing the nipple/areola makes it more difficult I totally understand. I guess at this point I am just curious about the details I missed the first time around.

Dr. T responded early this morning, simply saying:

Waning, 
Can you give me a call this afternoon - after 4pm? I can discuss this with you in more detail and address your questions much better. My cell is XXX-XXX-XXXX.
Ty Tahm, MD

Okay, so I know he gave me his personal cell number from the get-go, but even so, it seemed a little bit much. But since he had personally 'invited' me to call him, I knew it was okay. Nonetheless, I was super stressed about calling him. I called him around 4:15 this afternoon, while my son was out at my mother-in-law's, but unfortunately he didn't answer. It was sort of creepy, though, because his voice mail was something like, 'Hi, this is Ty...' which drives home the point that this really is a personal cell number, not one the university issues so you can pretend it is personal (plus, it's an out-of-state number). I've never had a doc's personal cell phone number, and figure the day I'm expected to give my students my cell phone number is the day I need to quit, so... it's not a trivial thing, and a privilege I don't dare to abuse.

Dr. T called me back around 6:00, about the time I had given up hope I'd hear from him today. The funny thing is that when I answered my phone, he asked if he could speak to 'Ms. Moon.' I paused for a good second, then realized, Oh wait, that's me, then said, Um, this is... Waning. Then he actually sort of gave me a hard time about it, haha, like, Oh, you don't like to be called Ms. Moon? I mean, I've come to understand it's a sign of respect some physicians use; my very sweet, but unfortunately somewhat incompetent, orthopedist introduced me to this. I sort of thought it was because he was so young, but maybe some doctors feel that if you have to call them Dr. So-and-So, you should have a title as well? Who knows.

Anyway, he briefly explained the whole nipple thing, which I honestly didn't get 100% or even 50% the second time around. Basically it would involve an extra incision and further consultation with Dr. C, which would obviously add complexity to an already fairly complex puzzle. However, he is fully willing to pursue it further now that he knows it interests me. Honestly, it doesn't matter to me that much. I mean, it does. Don't get me wrong. Just like the mastectomy, it suddenly matters more than I would have thought, knowing that it's a realistic option. I think when I initially met with Dr. T, I was just so thankful he was willing to work with me that I was willing to take whatever he could offer, and didn't want to be overly needy. But now... I am getting more needy. LOL.

Oddly enough, the nipple thing didn't seem to the be the top thing on Dr. T's mind. After our nipple conversation, after which I was perfectly willing to hang up and let him have dinner with his family (around 6:15, when I was also preparing to have dinner with my family), he said, 'Soooo...' and I braced myself. In my experience, soooo.... is not usually followed by good news, and especially not from doctors you see when you have cancer. He followed the soooo with, 'I was reviewing your medical history, and saw you have a history of...' I was fully expecting him to say 'DVT,' even though we discussed this at our meeting. I just figured it was one of those 'Oops, I wasn't really worried about it when I thought you were seeing me for a second opinion, but now that I'm actually going to do surgery on you, I am.' But, he went on to say, 'I saw you have a history of hemoglobin E.'

Yup, guilty as charged. I've written about having hemoglobin E before, and the last person to take a serious interest in it was the anesthesiologist during my first surgery, even though it so did not matter at that point. Dr. T asked if I saw a hematologist 'to manage it,' and I said no, and admitted that I knew absolutely nothing about it except that a doctor had told me almost 20 years ago that I had it. I added that this was pre-Internet era (he chuckled knowingly), and that it was only discovered because I was tired all the time and had a history of anemia. I didn't even know if I was heterozygous or homozygous or what, but would actually be interested to know.

Dr. T went on to say there was study that showed that people with hemoglobin E who had had their spleens removed were at higher risk for blood clotting. He then added that he knew I hadn't had my spleen removed, and that he was fairly confident that my blood clot was a result of my hip surgery, BUT, he just needed to be sure I was at minimal risk for blood clotting. We had discussed this during my consult - because the surgery involves re-connection of many blood vessels. If any of them clot, the transplanted tissue will die, and you're screwed. And no matter what, you have to be under strict observation post-surgery for 48 hours. But at the time, he said post-surgery DVT, especially after hip surgery, was different than DVT out of the blue, which is what both medical oncologists had said.

But based on this one, probably obscure study (which I will for sure look up now), he was worried. He said, 'I hope you don't mind, but I e-mailed one of my colleagues, who is a hematologist, and told him your history, and asked if I should be worried about doing this type of surgery.' He said this very apologetically, and added, 'I just want to be as safe as possible.' I assured him I was 100% okay with being as safe as possible, and that I definitely didn't want to die during surgery, nor go through all of this only to have a failed surgery. And furthermore, I was completely willing to undergo whatever further testing might be necessary so we could be certain I don't have a clotting disorder. I mean, I am pretty sure I do not, and I shared my history of insane nose bleeds with him (I actually had to have my nose cauterized in first grade because it wouldn't stop bleeding), but still. Better safe than sorry. This could be life or death. And even if it isn't, I'd hate to go through all this hell only to hear at the end, 'Oh sorry, your flap didn't take. Your blood vessels clotted, and the tissue died' (which is within the realm of possibilities even without abnormal blood). It was sucky enough to hear my hip surgery didn't work because my surgeon wasn't thorough enough to review the complete anatomy of my hips, and I'd like to avoid that in the future, for sure. FOR SURE! Of course, I'd be devastated, after all of this, to find out this surgery isn't possible, but at the same time I'd rather know before than after. And I'm VERY grateful to have a doctor who is being extremely thorough.

In the end, Dr. T said somewhat apologetically that 'We are really trying to schedule this surgery as soon as we can,' but reiterated that he wanted to do everything safely and in a way that gave the greatest chance of the best outcome, and that we needed to give his hematologist colleague up to 48 hours to review my case and get back to him. After he heard from him, he would e-mail me 'or something' to let me know what the conclusion was. He was so apologetic about it that I had to keep assuring him I was not only okay, but was also appreciative, of the fact that he was being thorough. I said something along the lines of wanting the best care possible, and he finished it off by saying, 'which is why you came to see me.' Pause. 'I mean, why you came to UH.' HA! We both laughed at this 'joke,' which was actually not really a joke. It's true. Like I said before, Dr. T is the perfect combination of confident, but yet down-to-earth, compassionate, and in no way arrogant, the evidence being that we were having this conversation on his personal cell between 6:00 and 6:30 PM. I also looked him up on PubMed, and he has a bajillion publications, several of which are about preventing blood clots during reconstructive surgery, so whatever confidence he has, he has the credentials to back up.

Of course, I hope that everything continues to unfold in the way it seemed to be unfolding after my initial meeting with Dr. T. But if it does not, I at least have full faith that my doctors honestly have my best interest in mind. I truly, truly believe this, and that is a really huge thing.

Ashleigh Range

As I mentioned previously, my vacation 'beach reading' consisted of reading blogs about breast cancer. A lot of them don't have a happy ending, or are headed toward what is obviously not going to be a happy ending. Some of them are insanely funny, some insanely informative, some insanely sad, and some all of the above. Of course, anyone can start a blog, for free, so buyer beware. The only requirement I have for the blogs that I follow is that they be well-written, but most importantly, very real. In the Internet age, I can read about any medical description of a procedure and even watch a video of it being done on YouTube, but the reason I read blogs is because I want to know what it's REALLY like, from a person who has actually been through it or is currently going through it. I want to laugh and cry and be like OMG I can totally relate! and feel like the blogger put into words the things I'm feeling but just can't express. 'Real' is usually some combination of informative, funny, and sad, all at the same time. Of course, none of this is OMG HAHA FUNNY, but as a friend recently wrote me, It's horrific. I really think you have to laugh for crying. And then maybe a good cry anyway.

At any rate, during my Googling spree in Florida, I came across a blog by a woman, Ashleigh Range, with metastatic breast cancer. I was immediately sucked in, and maybe that wasn't the best thing, especially since in reading through the whole blog (which I stayed up two nights in order to do), I understood the grim reality that most people feel fairly optimistic at the time of their first diagnosis. Very few people are terminal from the get-go. Though, to be fair, as far as breast cancer goes, Ashleigh's diagnosis was fairly grim from the beginning; it was a rare type of breast cancer called inflammatory breast cancer, which is at least Stage III by definition, because what causes the 'inflammation' is cancerous cells clogging up the lymphatic system. So IBC patients are thrilled to have a Stage III, versus Stage IV/terminal, diagnosis. Hers was also triple negative, which in Breast Cancer Land is not a good thing, because there currently aren't great treatments for triple negative breast cancer.

Despite Ashleigh's cancer being as different from mine as possible in terms of breast cancer, and despite the fact that we are obviously extremely different types of people (a lot of her blog is about God and Jesus and her absolute, unwavering faith), I was immediately drawn in. Each entry is so well-written and heartfelt, that I can feel the absolute amazingness of Ashleigh and her husband radiating from each entry. But still, it is very real. Amazingly optimistic, yet real. Although she and her husband are very up front about the fact that they believe in miracles and believe in a God who can and does grant personal miracles, and that prayer increases the odds of a miracle, they have never been in denial about the fact that Ashleigh was likely going to die. At age 30. With a two-year-old and a one-year-old.

And she did die. Yesterday. But I read it on her blog this morning, and I won't lie, I cried. I cried more than I have cried over my own diagnosis and all that has followed. It seems ridiculous, crying over the passing of a complete stranger, when people all over the world die horrible deaths for no earthly or (in my opinion) divine reason. Ann Silverman, another of my favorite bloggers, writes about coping with the death of someone you didn't 'really' know but yet cared about deeply here: http://www.butdoctorihatepink.com/2015/03/rip-lisa-bonchek-adams.html. Apparently trying to mourn the loss of an 'Internet only' friend or even someone you just knew through a blog is difficult territory, uncharted in even this 21st century age of the Internet. In a way, it can be harder than losing a 'real life' friend because there aren't real protocols in place for losing people you never met in the flesh, and people think you're crazy if you do.

Ashleigh's husband's words today embody why this is a couple whose blog draws in complete strangers. He wrote:

We Christians use a lot of platitudes to describe death; phrases that, despite their underlying truth, become saccharine and trite in how they seek to make death's reality and apparent finality more palatable.  "She went home"; "she went to be with Jesus"; "She passed away"; I've even heard "graduation day" used to describe this.  I was there in the room, so let me be perfectly clear: she died. 

Death is swallowed up in victory.  O death, where is your victory? O death, where is your sting? -1 Corinthians 15:55 

The use of this passage at funerals has always struck me as slightly misguided.  Where is death's sting?  It's right. here.  I'm feeling it's sting as I try to make arrangements, answer a hundred "how are you doings?", and most of all when I sit down with my two-year-old and try to explain how it is that mommy can love him very very much but that she won't be here with us any more. How hard she fought to stay with us.  How even though she was very sick, now she is all better.  How she is in heaven with Jesus.

So this morning I cried. A lot. Maybe some of those tears were for my own uncertain future, but despite the fact that I didn't know her and only discovered her blog a few weeks ago, Ashleigh Range's death had a huge impact on me. It's that 'real' side of blogging that keeps me reading blogs. What a terrible, terrible loss of a really incredible individual. And I write this knowing that some of you will understand this. Some of you who read this I know only through the Internet, yet we have 'known' each other over 15 years, since before I was married and way before I had kids. Before you were married and had kids. Before you even graduated from high school. You are dear friends to me.

RIP Ashleigh, and I pray with all my heart for her widower Brad, and her two young sons, ages two and one. This breast cancer stuff, it sucks. It really, really sucks.