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.