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.

Peace be with you.

I had a perfect evening.

A friend came by after work and we had a late-afternoon mojito (part of my get fat quick plan), then after she left, we went out to dinner as a family at a lovely restaurant downtown - a gift from my brother and sister-in-law. As we were enjoying our meal, my husband asked if it was a Christmas gift or birthday gift or what, and I said, 'No, it's a cancer gift.' Since they live far away, they sent us a gift card instead of bringing us a meal like so many others have.

Afterward, we went to a Johnny Cash show - one of those imitation bands. It was a little late for the kids, but they know Johnny Cash, because I make them listen to him in the car when I get sick of listening to the Frozen soundtrack. Going to shows like this is not really my top choice of activity, but my husband really wanted to go, and I'm glad we did. I think the average age of the audience was, like, 65, though. LOL. The band brought A LOT of attention to the fact that we had brought our kids, saying how great it was that some parents were introducing the younger generation to the great musicians of the past. It was sort of embarrassing.

I absolutely love Johnny Cash. About 20 minutes into the show, I was overcome with an overwhelming sense of peace. Everything is going to be okay. I know it. I feel so calm, happy even.

I am so lucky. I have insurance, good insurance, and my husband and I have good jobs. We have money in savings, and what better use for it than life-saving medical treatments? I just ate dinner at a fabulous restaurant that someone else paid for, then went and listened to some of my favorite songs ever all night. Really, what is there to complain about?

I think part of the reason it has taken me so long to get to this point was just the horrible timing of my pathology report coming back when Dr. L was on vacation and I was getting ready to go on vacation. When I met with Dr. M just before leaving, he did encourage me to see a plastic surgeon ASAP and now I understand why. At the time, I knew this was tough but I didn't realize just how much easier it would have been if I could have met with a plastic surgeon before we left.

After I got home on Wednesday, I sent Dr. T a slight emo e-mail, letting him know how happy I was to get to meet him, that I had full confidence in him, and that he was the answer to my prayers. I thanked him for making an appointment I literally felt sick about into a very uplifting experience.

He replied early the next morning:

Waning,

Thanks so much for the email. I think it's unfair for women to receive news like that without an opportunity to discuss reconstruction with a plastic surgeon. So, I was very glad that we were able to meet after you met with Dr C. She is outstanding, by the way.

Attached is an information sheet that I put together based on some feedback from my patients. It will outline some things to consider when you get home after the surgery.

Please use this as a resource and reach out to me whenever you have questions and concerns.

Best,
Ty Tahm, MD

I feel so full of peace right now, I want to bottle the feeling up and carry it with me through the next few weeks leading up to surgery. It reminds me of my church-going days. One tradition in our church was greeting the people next to you with a simple shaking of hands and, 'Peace be with you.' They reply, 'And also with you.' So, dear friends, peace be with you, as it is also with me.

Farewell, Dr. L

I had an appointment with Dr. L this morning, one that I had set up while on vacation. After yesterday, there was actually no purpose to the appointment, but I went anyway. I wanted to tell Dr. L of my decision in person, and I actually felt really stressed about it, as evidenced by the fact that when the MA took my vitals, my systolic blood pressure was 128, my pulse rate was 106, and I had a 99.7 degree fever. I felt sort of guilty, like I had been sneaking around behind a significant other's back and was now dumping her. I even brought her flowers. (No, I'm not kidding.)

Dr. L was her usual wonderful self, and put me at ease right away. And fortunately, she brought up the fact that I had gone to see a different surgeon up at UH without me having to. I mean, I knew she probably knew, because she is actually part of the university health system, so she is on the same patient portal as the folks at UH. When she asked me about the appointment, I told her I had found a plastic surgeon who was going to do my reconstruction. I quickly added that I was very sad, because I really wanted her to do my mastectomy. She totally understood, though, and as it turns out, I was right. The DIEP flap reconstruction I'm choosing isn't possible in my town because it is so complex and requires a team of surgeons working very closely with each other, and we do not have a major medical center where this type of thing happens. So the choice is not a hard one. She said the only flap reconstruction that the plastic surgeon she works with does is a TRAM flap reconstruction, which is much simpler, but removes your transverse abdominis muscle. She agreed that at my age, a TRAM flap reconstruction isn't the best option because of the long-term effects/risks of losing your abdominal muscle.

She did express surprise that I had enough tissue for a DIEP flap, though. I said Dr. T was going to have to use tissue from both sides, which Dr. Google told me is called a stacked DIEP flap reconstruction, and is considered even more specialized than a plain old DIEP reconstruction. Then I added that Dr. T said I might need a fat transplant later, and he could take fat from my thighs, which I was pretty psyched about. LOL. She asked if we had considered using my butt, and I said that my husband liked my butt the way it was. Then she made a funny face and admitted, 'I'd feel weird having part of my butt on my chest.' Ha! She did say that taking fat from the thighs and injecting it into a reconstructed breast gave very nice results, and that this was a good option for me. Then she joked that I'd be looking like Barbie in no time.

She inquired about the possibility of sparing my nipple or maybe just the areola, and I told her I couldn't remember the details about why this would make the reconstruction more difficult. But I think I will e-mail Dr. T for clarification now. Dr. L said that nipple reconstruction never worked out very well, but whether or not having a nipple matters 'depends on how nipple-y you want to be.' Ha ha, yes, she really did use that term. Nipple-y. Seriously, I've thought a lot about this while on vacation, and spent a creepy amount of time looking at women's breasts, and nipples, and found my eyes wandering to Dr. L's breasts as we were having the conversation. No perky nipples. I told her the thing about nipples is that I don't want to be 'nipple-y'; in fact, I'd be more inclined to want my other nipple cut off so I just don't have to worry about them at all. I was surprised when she said some women actually do this because they don't want nipple reconstruction, but 'It is weird to have one nipple out there (THO, or titty hard on, as my friend from high school used to call it) and the other one gone.' This is what I love about Dr. L. She has a very buoyant personality, but yet she doesn't sugar coat things. She is the perfect combination of positive and realistic; light-hearted and serious. It might seem trivial to be thinking about nipple weirdness in the midst of a potentially life-threatening condition, but I've noticed that even terminal cancer patients mourn losing breasts, losing their fertility, and things that seem small when you are likely going to die within a year. Perhaps this is how we maintain a sense of normalcy, a sense of ourselves.

There is something comedic about the conversations that revolve around breast reconstruction, but maybe that is a testament to the conflicting messages women get about their breasts. It is funny and yet not funny at all. In the end, Dr. L said she thought I was making a good decision, and said that if she were me, she would do exactly what I'm doing. Her endorsement meant a lot, simply because I have such a great deal of respect for her. So I reacted appropriately and burst out crying (and unfortunately I'm not kidding).

From there on out, I think it was more of a therapy session than anything. We mostly talked through some of my emotions while she hugged me and I cried. She said she was honestly surprised that some women could come to her and so easily ask her to cut their breasts off, without a second thought, and said she felt like I had 'an appropriate amount of sadness.' And even though I'm having the mastectomy done at UH, I can still call her for anything; I'm forever a part of her 'team,' and We will get you through this. She said if I need any post-mastectomy care that is not worth driving up to UH for, she is happy to provide it - like, 'when you need your drains removed.' I made a face, thinking about the reality of it all. Apparently the drains you have in you after a mastectomy are pretty much The Grossest Thing Ever. Dr. L responded to my face and said, 'Yeah, the drains are pretty gross.' Ugh.

Toward the end, I told Dr. L the hard thing about cancer was that doctors who did oncology stuff were so amazing, top-notch. She replied that was a good thing, no? I said it was going to be really hard for me from here on out to find doctors who could live up to my standards. I think she appreciated that. Then we joked about different types of doctors, swapped information about a few, and she agreed with me that in general, orthopedists are THE WORST. I said I was certain that after all this, I would never ever be able to find an orthopedist who was even close to acceptable. Then I added somewhat jokingly that I was tempted, since the mastectomy will surely bring us up to our out-of-pocket maximum for health care, to have my hip reconstructed before the end of the year. I'm not really seriously thinking about this, just because it would be way too much trauma for one year, both emotional and physical. Based on the pain from the lumpectomy, I'm guessing the pain from the mastectomy would make being on crutches pretty impossible. Dr. L said that of course I needed to take care of the cancer first, but also empathized with how difficult chronic pain is.

Eventually she brought me some information about various cancer resources - therapists, support groups, and whatnot. A few of them actually look useful. One thing that looks interesting is that the hospital offers yoga classes every other Monday night for cancer patients, which I am interested in trying to attend. I feel like my body has sort of gone to hell over the past year, especially since losing my ability to do my favorite type of exercise, which is going on walks. I really want/need to do something physical, and yoga might help with my stress as well. At the same, going into a yoga class with seasoned yoga-goers (with fresh, perky boobs in tight, nipple-revealing yoga get-ups) seems somewhat stressful right now. A friend and I had discussed going to yoga together, but now with all of this, I don't see it happening soon. But yoga with other suffering people might not be so bad. LOL. And as Dr. L pointed out, the yoga instructor is an oncology social worker with an understanding of people's needs and limitations.

In the end, I semi stopped crying, thanked Dr. L over and over, and gave her the flowers that I had dug up from my garden and put into a pot. At first I had made a bouquet from cut flowers, but it wasn't very pretty and looked like it would be messy. Plus, I wanted something that would keep living, not slowly fall to pieces and leave sad-looking flower skeletons in a vase of algae-filled water on her desk. Yes, you can read into that. There is some symbolism here. She was extremely appreciative. Then the nurse navigator came to say goodbye to me and I started crying all over again. You'd have thought I was just told that I was in Stage IV. It is amazing how much a doctor can impact you - good or bad. Of course, I am sorry that I had to know Dr. L at all, but I will forever be so grateful for the care that she provided for me, and for her absolute, genuine compassion. It has truly been a blessing.