Saturday, November 21, 2015

Vacation from Tamoxifen

I've been under the weather for what seems like way too long. On Tuesday night, I noticed I had a sore throat that started around bedtime. Then my daughter woke us up in the middle of the night to tell us her throat hurt, and in the morning woke up crying and saying she couldn't go to school (which means it's bad, because Ellie loves school). Unfortunately for her, not going to school meant coming to physical therapy with me, then up to work, where she took a nap in my office then threw up in the trash can outside my office. We came home after my work meeting and both took a nap. The only thing worse than taking care of a sick kid is taking care of a sick kid when you yourself are sick. Ugh. By Thursday, Ellie was fine, but me... not so much. I don't feel sick sick, just under the weather and very blaaaaah. And I feel like I'm getting progressively worse rather than better.

Anyway, I'm not writing this as a woe is me post. I'm writing this because I saw my oncologist on Friday, and I was feeling pretty dang crappy at the appointment, and NOT because I was hungover, haha. In fact, my litmus test for sickness is my desire for alcohol, and the thought of wine has repulsed me for four days. The tricky part about being sick is that the appointment was to discuss how the tamoxifen has been treating me, and it's hard to know when you've been feeling soooo crappy for the past few days. The tamoxifen does seem to have some side effects, but of course it's hard to know what is the tamoxifen and what is the cold and what is just... life.

I told Dr. M that the tamoxifen wasn't as bad as I was expecting, which admittedly isn't saying much. Then I mentioned that one thing I've noticed about the tamoxifen is that, in a way, it makes me feel like I'm pregnant: I have a bit of nausea in the morning, higher than normal levels of fatigue, and unexpected aversions/cravings where food is concerned. Then he looked at me suspiciously and asked, 'You aren't pregnant, are you?' I sat there for a second, shocked, before I was able to reply, 'No. NO! I'm definitely NOT pregnant!'

We then discussed the fact that a lot of what I'm feeling isn't textbook tamoxifen, so it may or may not be due to side effects. As Dr. M pointed out, I have been through a lot; I should be tired. That actually made me feel a little better, because I feel like at this point I am supposed to be normal and happy and cherishing life and making the most out of every day because, after all, YAY I AM A CANCER SURVIVOR! Or something like that. But I don't feel that way; I feel pretty blah and crappy - sort of like I had my abdomen sliced open, scooped out, and super glued shut in the recent past! Dr. M nicely pointed out the latter to me, while at the same time not dismissing my fatigue altogether. It could be the tamoxifen. It could also be something else - a thyroid problem, for example. He also mentioned that my MCV (mean corpuscular volume) from my blood draw last week was a little low, which suggested I might be slightly anemic. We also talked about my on and off insomnia, and how that could be a factor, too. He asked me if my insomnia was a 'pre-existing condition' and I said yes, though the tamoxifen certainly isn't helping, because I do have hot flashes at night that wake me up.

The thing is that none of this really matters. There is no alternative to tamoxifen, other than not taking it, which would not be a prudent decision, IMO. I mean, I could always go for the ovarian suppression + aromatase inhibitor, but that would almost certainly have worse side effects. Nevertheless, Dr. M seemed to feel that we should try to tease out the real effects of the tamoxifen to make sure we aren't missing anything else that needs attention. Once we are more certain of the side effects, we can perhaps work toward managing some of them, as needed. As he said, 'I don't want you to be miserable for the next ten years.' Oh yeah? Me neither.

With that in mind, Dr. M invited (yes, invited) me to 'take a two-week vacation from tamoxifen.' The cancer isn't going to come back in two weeks, and 'If the clouds part, and the sun comes out, and you're like ahhhhhhh! then at least we'll know it's the tamoxifen.' Then he said, 'I have a Ph.D. in biology. I understand how it works: you eliminate one variable at a time.' LOL. I joked that he should come in and cover the cancer section in my classes. (And being that he is no Dr. T, he pretty much rolled his eyes at me and said Chhhhhyeaaaaah, right.) He also said that it couldn't hurt for me to take some supplementary iron or try to beef up the amount of iron in my diet to address my low MCV.

As much as I'd like to be like to be like YEEEEHAAAW, no tamoxifen for two weeks! I've decided to give it some time. Whatever the side effects, they are really not terrible. Plus, if I stopped taking it right now and started to feel better, I wouldn't know if it's because this damn cold finally got better or because I stopped taking the tamoxifen. Plus, I think I'm going to re-start taking a multivitamin, and wait, wouldn't that be introducing two variables at once?! See? I understand how biology works, too. LOL. There are so many moving parts in my life right now, there's no way to completely pin down what is causing what, but I will definitely take Dr. M up on his invitation at some point between now and my next appointment with him in six months.

In other news, I e-mailed Dr. T to tell him I was backing out of the surgery. The grown-up professional in me told me I should call him, but then I figured that would be more of a bother for him. Besides, if he were a normal doctor, I would not have his cell phone number, and at best I would be able to call the office and leave a message for him, or e-mail him through the patient portal. I thought I would feel really good after I canceled the surgery with his scheduler and let him know, but then the insecure schoolgirl in me stressed until he responded: No worries, Waning. I support you any way you decide to go. Have a wonderful holiday.

I'm really going to try to have a wonderful holiday. As I told Dr. T in my e-mail, I need a vacation from thinking about all this - hips, cancer, everything. I feel like my stress levels have been rapidly rising as I realize that it is almost December, and before you know it, it will be January, and I will have to go back to work. But that is getting ahead of myself. I really need to stay in the moment and enjoy the remainder of this year for what it is.

Thursday, November 19, 2015

Lovely Dr. L

So, after a lot of reflection, I decided to go ahead with revision surgery. It is tentatively planned for December 4th, although I keep playing phone tag with Dr. T's scheduler re. the specifics. Usually when I make a decision like this, I feel good, and don't look back. I'm not a look back type of person.

The only thing is that ever since I made the decision, my stress levels have risen astronomically. I feel unsettled, not right. I don't think it is anything more than the fact that I can simply not face another surgery. I just can't. I thought once I committed I would rally and get geared up for it, but instead, I'm just filled with a horrid feeling of dread and doubt and enough is enough. My insomnia is creeping back, and I feel like crying a lot. My gut tells me this is wrong. I'm sure there are other things going on, too, and this isn't entirely about the surgery, but still. It's definitely not helping.

I regret being so hungover at my last appointment with Dr. T because I feel like I didn't ask the right questions or express the right concerns, and he is not the same on e-mail. I wish I could rewind and have a do-over of my appointment, without taking away the fun of book club the night before, that is ;-). But regardless, I also feel like Dr. T cannot be completely objective when he talks to me about what next. In a way I feel like we can't just have an honest conversation about pros and cons because he's trying so hard to not come across as pushy. Maybe we just know each other too well at this point. It's hard to say. We talk to each other so easily about everything else, but the topic of revision surgery seems to be a sticking point.

My husband is just about as tired of surgery as I am and thinks I should leave well enough alone. At the same time, he is sort of resigned to an 'I want what you want' attitude. I also think he's afraid to suggest that more surgery would be a good idea because that would be like saying the way I am now is not good enough for him, and that can get husbands into a lot of trouble.

So, what should you do when you don't know what to do? Get another opinion. See? I've actually learned something from all of this. So I called and got myself an appointment with Dr. L, because I felt like I was going sort of crazy, and she is my go-to person when I'm going crazy. Fortunately, in some of our e-mail exchanges, she had mentioned that she would love to see the result from the reconstruction, so I had a reason to make an appointment other than 'I need counseling.' It did cross my mind that she might come into the room and be like 'WTF are you doing here?!' but she didn't. In fact, she came in and said, 'Hi cutie! It's so good to see you!' and gave me a hug.

Dr. L thought the reconstruction looked great and that even my nipple looked great. Apparently the humiliated, flattened nipple is as good as it gets for nipple-sparing mastectomies, which is good to know. Like I said before, I'm just grateful to have any nipple at all, but somehow Dr. T led me to believe this was a bad outcome, so it's comforting to know it's normal, and that I never should have expected anything better. Then Dr. L asked me if I would do it again, which was an interesting question. We had a rather profound discussion about breasts and breast reconstruction and the weirdness of all of it. I told her that if I were to go back in time for a do-over, I'd absolutely do it again. It was the right choice this time. But if I have to deal with this again in the future? I don't think so. I told her that I had already questioned Dr. T about what I could do if I ever needed my right breast replaced, and he had told me that you can always use fat off your back. I told her that at a certain point, you have to ask yourself when is enough enough? All this self-mutilation for a feelingless lump of flesh that really serves no purpose? It's... weird.

Dr. L totally got it - all the complex feelings that go into and come out of all of this that are so hard to explain. She said she was curious about my feelings because 'my twin' was coming in this afternoon, and surprisingly had no interest in reconstruction right now. She asked if I would be willing to do peer-to-peer mentoring for any of her patients who were interested in reconstruction, particularly DIEP reconstruction, and I said absolutely. She said they were just starting a new program to connect patients with each other to help women understand the reality of mastectomy and reconstruction - to get the honest truth about what it is like.

Finally, we got to talking about revision surgery. She unequivocally said not to do it. Not yet, anyway. It's not just that I need time to heal and be normal, it's that I might not even need it, if being larger on one side is my chief complaint. She said that in her experience, it can take up to a year for the swelling from the surgery to go down, and she has seen cases where women had one breast reduced, then a year later it was too small, and they had to have more fat put back in. Her suggestion was to wait a minimum of six months and see how I feel next year.

It seems like a no-brainer, when you think of it like that. And when you think of it like that, you also realize that you are making decisions based around insurance and money, and that these might be the wrong decisions, if time is the only thing that can truly answer your question. Then your heart fills with love for this lovely woman who spent half an hour talking you through your complex emotions and giving you good, solid advice over an issue in which she has no vested interest at all.

It's totally clear to me now: I really don't want to do this. Not now, anyway. I need more time, and that's okay. In the large scheme of things, if waiting costs me an extra few thousand dollars, then so be it. I am hoping this isn't just because I think Dr. L is a goddess, and I would jump off a cliff if she told me to. I'm chalking it up to the nature of modern medicine, which is something like those 'choose your own adventure' books I used to read as a kid: patients are charged with forming their own opinions, then shopping around to find a medical professional who agrees with said opinion. After all, if something in my gut hadn't felt off, I never would have made an appointment with Dr. L in the first place. And quite honestly, I was pretty surprised by her strong anti-surgery stance. I mean hello, she is a surgeon.

So, I am going to call the surgery off and spend December healing more and enjoying the holiday season. I just need to call or e-mail Dr. T and let him know. I'm thinking about waiting until the night before, though. You know, just to get even.

Just kidding.

Tuesday, November 17, 2015

How much longer do I have?

I'm not going to lie; I've been feeling very depressed for the past few days. I don't know if it is the tamoxifen, the change in weather, or that the world is a very scary place these days. That we are essentially at war, one that is not going to end in my lifetime. Life just seems so... ugly. We all have personal struggles that we fight within ourselves, and I've been fighting plenty of my own as of late, but for what purpose? To get shot senselessly in the street or at a concert? So I can live to watch my children grow up in this terrible world?

Anyway.

We got a lot of snow last night and this morning, and as a result, we are all enjoying a snow day. I should be enjoying it more, I know, this precious time with family. Instead I've been moping around feeling sorry for myself, on the verge of tears for I don't know what reason.

My morning started off with a visit to my orthopedist, or more precisely, my orthopedist's nurse practitioner. I know a couple of other people who use this orthopedist, and they are not convinced he actually exists, because they have never actually seen him. LOL. I didn't realize what a rare event it was that he blessed me with his presence during my first appointment with him back in March. Fortunately, his NP, Shana, is fabulous; I like her a lot and trust her far more than pretty much any orthopedist I've ever met.

The orthopedic group is about as far away from my house as it can be without being in a different city, which made for a harrowing drive through the snow on icy roads this morning. It was probably not the best decision to go to the appointment, but the roads were not bad where I live, so I figured I'd be fine if I left plenty of time. It was only once I had gone about 10 miles north that the conditions got a bit hairy, and by that time I was halfway there, so I figured I might as well grin and bear it. Despite leaving 30 minutes to get to the appointment, I was 10 minutes late, so I was pretty stressed out by the time I got there, and wondering if I was even going to make it back home, as it continued to snow.

There were really no surprises during the visit. Being that she is very thorough, Shana noticed I had had a kazillion other tests run on me since we last met, so I gave her a brief synopsis of my cancer saga. Then she went over the MRI results from my left hip, and indeed, I have a 'degenerative labral tear' in that hip, too. Which essentially means that hip is on its way out as well. If I want a long-term fix to this, I need to have a periacetabular osteotomy followed by labral reconstruction on both freaking sides. She said that at this point, I would probably not even be a good candidate for a labral repair, at least not on my right side; I'd probably need a labral reconstruction, which involves taking tissue from a cadaver and making a new labrum. (!!!) So she re-referred me to Dr. Not Friendly, the doctor who does PAO surgery, and said that I should at least consult with him. But basically it would be something like this: PAO surgery on my right hip, followed by labral reconstruction a few weeks later. You have to be on crutches for, like, two months after the PAO, so you might as well fix the labrum (which requires one month on crutches) while you are at it. Repeat for the left side. That's a lot of freaking time on crutches and a lot of freaking surgeries. It's not possible to do any of them simultaneously because of the time that you would have to be under and the risk of blood clots, which is especially relevant to me given my history AND the fact that I'm on tamoxifen now.

Needless to say, my next question was, 'So if I do nothing, how much longer do I have before I can't walk at all?'

And this is the part that makes me cry. Instead of saying what I wanted her to say, which was Oh stop being a Drama Queen! We always have the option to manage this conservatively! she just looked me in the eye, and very apologetically said, 'I don't know.'

I don't know.

I pressed her more, 'Are we talking months? Years? Decades?'

I don't know, she repeated. There aren't enough data to know. She said my case was severe and complex, although I did have some things going for me - I'm not obese, I don't have diabetes, I don't smoke. Aside from the architecture of my bones, I don't have any risk factors for severe joint degeneration, so it was hard to say. But without actually saying so, she corroborated my worst fear - that if I do nothing, I will reach a point at some yet-to-be-determined time in the future where I really won't be able to walk. It's that bad.

I told her about my colleague's rapid decline and very sudden need for a hip replacement, and how that worried me. She said that usually in cases where people needed an 'emergency' hip replacement, they have arthritis, and I don't have arthritis (which is apparently some kind of miracle, according to what the orthopedist told me at my last visit). And while on the topic of hip replacements, she did also say that having the PAO surgery and labral reconstruction would not necessarily preclude the need for hip replacements later.

Awesome.

We did talk about conservative, non-surgical options, and while she was sympathetic to me not being up for any major surgeries anytime soon, she did not hide the fact that she did not see conservative options as a long-term, sustainable solution. However, she did agree to give me a prescription for meloxicam, which has helped me some in the past, and said if I wanted to make an appointment for a cortisone injection, I could do that, too.

Shana was also very concerned about the mass in my uterus that no one else seems to care about, and said that I really need to have a pelvic ultrasound, which I know. It's on my list. Yesterday I went so far as going to the web site of the OB/GYN practice that Dr. L recommended to me. It is a husband-wife practice, but I didn't like the looks of the woman (seriously, if you can't smile for a picture that you are going to post on the web advertising your services examining girl parts, it freaks even the non-smiley of us out) and male OB/GYNs creep me out. So there you go. Shana said she knew of a few new OB/GYNs in town 'who are supposed to be good,' and said she would refer me to one of them. After I got home, her assistant called me with the information and said that they would actually be contacting me to set up the pelvic ultrasound. I guess that is one way to get it done. LOL. How funny it took an orthopedic person to push this on me. Of course I promptly Googled the doctor Shana suggested, and it turns out that he is actually a gynecologic oncologist and is part of the same cancer center as my medical oncologist. I didn't know we actually had those specialists in my town, but I have to admit it does seem like a good choice for this particular problem, so I will try to get over the fact that male OB/GYNs are creepy, be a good girl, and go in for my ultrasound so I can get even more bad news.

Who knows, maybe all this hip nonsense will end up being a moot point. Please excuse all of the self-pity, but I'm going to sign off and go have a good cry.

Monday, November 16, 2015

Back to My Hips

Yeah, remember my hip problems? Why this blog is called 39 and Hip? (On a side note, it should now be 41 and Hip.) Well, because I'm tired of writing about cancer, I'm going to post something about my hips.

They. are. killing. me.

Okay so not literally. (I'm pretty sure I've admonished myself previously for using that phrase because nonono, one cannot die from hip pain.) But seriously, my hips are terrible, terrible, terrible.

It all started with a road trip I took with my family that involved sitting in the car for 20+ hours over a period of four days. The trip also involved a fair amount of walking, which sadly also hurts my hips. I cannot win. Walking really hurts, but at least sitting hurts worse. LOL. Ever since the road trip almost a month ago, my hips have been bad news.

I've had it in the back of my mind that while I am not working and while I have free medical care (free as in 'free'), I should go back to my orthopedist and discuss possibilities for managing my hip pain, and at least find out the results of the arthrogram I had on my left hip back in April. Not surprisingly, I didn't get around to it because even after all this, making doctor's appointments still induces high blood pressure.

But. I have a colleague who also has hip problems due to hip dysplasia. This colleague is only a few years older than I am, and her younger sister has already had both hips replaced, so she gets it. We exchange sad hip stories and gripe about our orthopedists a lot. It is nice to have someone who realizes just how much a cortisone shot in the hip can hurt and how distressing having such severe hip problems at a young age is. Apparently while I've been wrapped up in my cancer saga, her hip got really bad really fast, and now she is having a hip replacement December 1st, which she told me about last night.

I then proceeded to have a nightmare about having a hip replacement, and woke up all confused until I realized Phew! I'm not the one having a hip replacement! However, my relief was immediately followed by But dammit my hips really ARE killing me! &*%#!

All this to say that I finally made an appointment to see my orthopedist. Tomorrow. Because, yeah, bad hips cause more pain than cancer, even though cancer really can kill you.

Sunday, November 8, 2015

A Photographic Journey

Since I'm not teaching, I'm trying to get a jump start on things that I'm normally not all that good about doing in a timely manner, like working on our Christmas cards. This has involved going through all my photos from the year. Let me just say that there's a dearth of Christmas card worthy photos from May on; however, I do have a lot of selfies I took with my phone. LOL. I decided to make a random compilation of photos that I may add to from time to time. 

It is here: http://39andhip.blogspot.com/p/a-photographic-journey.html

Saturday, November 7, 2015

Sweating the Small Stuff

I had book club on Thursday night, and nine of us went through nine bottles of wine. The only reason I'm including this is to set the stage for Friday, when I had to get up and go to physical therapy and then drive 60 miles to go see Dr. T. OMG I was so not in the mood for anything but lying in bed and sleeping. I saw a book club friend at an event on Friday night and she told me, 'Ugh - I think I'm still hung over!' I joked, 'I think I might actually still be drunk.' LOL. Jesus Christ, I have no idea what we were thinking.

Yeah so anyway, needless to say, I was not myself at my appointment with Dr. T. He brought in his laptop to show me pictures from my surgery (my request*) and while I had promised not to throw up, it was a harder promise to keep than I had imagined, haha. It had nothing to do with the pictures, though. ;-)

* At BRA Day, I asked Dr. T why exactly my surgery was so complicated and anxiety-inducing. He said the complicated part was that he had to use such a large area of my abdomen with just one blood vessel. Then he pulled out his phone, as if he were going to show me the pictures, and was like, 'Oh, I don't have the pictures on my phone.' That was sort of a relief, because, uh, that would have been weird.

After we looked at the pictures, which was really an experience, he showed me pictures of his kids playing soccer and we had a long conversation about soccer and sports and how my daughter, ironically, doesn't have an athletic ounce of tissue in her body. Then he went and got his 'chaperone' for my exam.

Everything is fine. It is not great, but it's fine. I knew this. Highlights:
  • My nipple made it, but as Dr. T pointed out, 'It's angry.' It's actually more like it is humiliated, in my opinion, which on a normal day I would have pointed out, only due to my wicked hangover I just sat there moaning to myself OMG I want to go hooooooome. My nipple is deflated, flat as a pancake. Whatever. I'm just happy to have a nipple that isn't a tattoo, and I went into the surgery fully expecting that my nipple wouldn't make it, so having one at all is bonus. 
  • My nipples are uneven, mainly because my natural breast sags a little and my foob ( = fake boob) does not. 
  • My foob is significantly larger than my right boob. We've known this all along, but it didn't prevent a rather humorous exchange in which Dr. T remarked, 'You're bigger on the left side' and I replied, 'Yeah, I know' in a tone that implied Of course I am - YOU made it that way! He smiled, because he understood what I meant, and explained that sometimes some of the tissue doesn't survive, so it is hard to know at the time of surgery how much to put in. As I recall him telling me right after the surgery, it's better to put more tissue in and take it out later than to not put it in and then later be like, 'Sorry, it's in the trash can.' (Yes, he really said that. Sorry, it's in the trash can.) Also, to be fair, my left side swelled quite a bit due to the seroma I developed after my re-excision surgery, so it was bigger by the time I met Dr. T. For all he knew, I had always been that way.
  • My foob is very hard. It's like a coconut. Dr. T said it will get softer. I looked at him suspiciously, and he said, 'I promise.' 
  • My third rib is very sore, and sticks out. I was convinced Dr. T had broken it when he removed the cartilage to get to my internal thoracic artery, although he assured me at the last appointment that he did not. (Of course.) Dr. T said it wasn't that the rib was actually sticking out more than it should; it just looks more prominent because I have breast tissue over my ribs on my right side, and none on my left. My physical therapist had observed the same, but told me to check with Dr. T anyway, because the rib does hurt a little. 
  • I have some lumps in my abdomen around my scar, which Dr. T said are probably scar tissue. Oh, and my belly button is slightly off center, which I did not point out, because... you know, the hangover. Zombie. All that.
I guess the biggest question mark is what, if anything, we are going to do about these things. They are minor things. As Dr. T asked, 'How do you feel when you're in a bra? That's the important thing.' And I feel fine in a bra, normal. I think I might even feel fine in a swim suit. I don't think about the surgery much anymore except at night, when I'm putting cocoa butter on my scars and marveling at how maimed I look. The thought of another surgery is pretty unpalatable to me at this point.

On the other hand, this was a lot to go through for a less-than-perfect end result. Not that the end result was ever going to be perfect, but in a way I feel like what is one more minor surgery in the large scheme of things? After all of this, if my nipples could be even, why wouldn't I want them to be? And since I met my out of pocket maximum with my first surgery, anything I do between now and December 31st is 'free.' Dr. T said this is why he never travels in December - besides the fact that with his kids' soccer schedules, he and his wife never have time to travel for anything other than soccer tournaments.

Dr. T didn't push more surgery on me. We talked about how I am tired of surgery and how my husband is tired of taking care of me and thinks I look fine, and he totally understood. He did say that it would be very minor, outpatient, and we could even do it in the surgery center at the clinic. I wouldn't even have to go to University Hospital. He would just take a little tissue out of my foob, and transplant some fat to the area around my rib to make it softer. 'Your husband just has to drive you, that's all,' he said with a grin. 'It will take me an hour and a half.' In the end, he told me to think about it, talk to my husband, and let him know. Then he added, 'You have my e-mail, and my cell number. E-mail me, call me, whatever.'

In the meantime, Dr. T said I should start massaging my abdominal scar to try to break up some of the scar tissue. He said that I could start stretching my abdomen, but that he still didn't want me doing any exercises like sit-ups until 12 weeks post-op. However, my incisions are completely healed, so it's okay for me to go swimming. (I had asked him about swimming, but didn't tell him I really just want to sit in the hot tub. Same diff. LOL.)

After he left the room, I took forever getting dressed, because of the hangover, and because I had to psych myself up for a 60-mile drive through lots o' traffic. So I was embarrassed when I came out of the room and found that Dr. T was waiting for me. He came down the hall with his laptop and said, 'Wait! I wanted to show you this video.' It was a video of him reattaching blood vessels during surgery - not mine, but, 'It's the exact same thing I did during your surgery.' I had to admit that I had already seen how it was done on a video of a DIEP reconstruction that I watched on OR Live, but it was cute that he wanted to show me. And it is honestly quite mind-boggling, all of it. And when I see in graphic detail everything that my body has been through, I'm in awe of the surgeons who have the ability to do this, and I'm in awe of my body's ability to heal itself.

So.

I am leaning toward just doing one final surgery, but... I don't know. It's sort of like it was with my hip surgery - in the end, I decided to do it because I didn't think I could live with my hip the way it was for the rest of my life. I am satisfied right now, but what if I change my mind in a few years? I should just do it now, while I'm at it. At the same time, five surgeries. FIVE SURGERIES, people! Jesus H, when is enough enough? Ugh.

I'm so tired of making all these damn decisions. Seriously, my parents and brothers are trying to make plans for all of us to meet the week after Christmas, because we were supposed to meet over the summer and didn't because of all this cancer shit. My brother keeps asking for input on where we want to meet, where we want to stay, etc., and I'm like JUST TELL ME WHERE TO BE AND WHEN! Ahhhhhh!

What should I do? Someone just tell me, please.

Tuesday, November 3, 2015

DIEP Reconstruction Aftermath: 8 Weeks

Probably the most notable thing about 8 weeks post-reconstruction is that I basically have no restrictions on my activity. I can work toward regaining full strength and function as tolerated. Before, I wasn't allowed to do any exercises involving my core (e.g., sit-ups, crunches, etc.). Because I have a lot (A LOT) of work to do - I seriously cannot even sit up from a lying down position - I'm going to start going to physical therapy twice a week for the next few weeks.

Physical therapy has actually been super helpful. It is so very different from the pretty terrible PT experience I had when rehabbing my hip. I've only done two sessions - one per week - but I've been very diligent about doing my exercises at home, and in just two weeks I was able to regain significant range of motion in my arm. I still have a lot of pain, especially in my shoulder and pectoralis muscle, but my overall function is just so much better than it was before, so I'm pretty thrilled. I am not looking forward to trying to rehab my formerly sliced open abdomen, as I have a feeling that's going to involve a lot more pain, but... eh. I can do it. Riiiiiiiiight.

My therapist has been very good about monitoring me for any signs of lymphedema, which is unfortunately a lifelong risk for me now, because I am missing lymph nodes. Fortunately I've escaped it so far, although I realize that it can rear its ugly head at any time down the road, and I need to be super vigilant about not getting any IVs in my left arm. (Honestly, I'm hoping I'm sort of done with the IV thing.) A sort of funny thing happened, though re: fluid building up. I had asked Dr. T about when I could stop wearing the abdominal binder, and he replied that I needed to wear it for 4-6 weeks. Ummmm, okay... is it 4 weeks or is it 6 weeks? There's a big difference, in my opinion. It's like clothes that are made for 8-10 year olds. WTF? But because I hated wearing the binder, and it was especially annoying after I started wearing real clothes again and trying to make myself presentable to go out in public, I pretty much stopped at 4 weeks, except around the house and while sleeping. It was a little weird to stop wearing it, because even though it was uncomfortable, I felt pretty naked without it after wearing it for so long. And it did offer some support/protection, and of course, the most important function was to prevent fluid from building up in my abdomen.

About a week after I stopped wearing the binder, I ordered a pair of pants online. I have a really hard time finding pants that fit, so I normally wouldn't do this, but it was a place I've bought many pants from, and I know what size to order, and the deal was too good to pass up. When the pants came, I tried putting them on, and they were sooooo tight, I was like OMG I HAVE TRUNCAL LYMPHEDEMA!! and freaked out. Later, I came to my senses and realized, nope, nope, I'm just getting fat. WHICH HELLO, should not come as any sort of surprise, seeing as how between my hips and cancer I've spent, like, two years on the couch (and let's be honest, it's not like I was a superstar fitness guru before that). 

Nevertheless, I asked my physical therapist about it, and she agreed to monitor my abdomen by taking weekly measurements, just to be certain it's bona fide weight gain and not fluid build up. (I'm not sure which one is worse, lol.) She also said that wearing the binder couldn't hurt, and suggested that if the binder was too uncomfortable, that I go out and buy some control-top undergarments made to compress the abdomen. That was actually a pretty brilliant suggestion, I thought, so I hit JC Penney immediately after PT, and was shocked by the number of undergarments designed to tame muffin tops. Who knew abdominal binders could be so sexy? I might just keep wearing my new undies indefinitely. Ha.

In other news, I've been taking tamoxifen for 22 days, and I am still fine! I've had a bit of weirdness with chills and some hot flashes, but my morning sickness is gone, and I'm still sleeping pretty well. I have physical therapy tomorrow and Friday of this week, and on Friday I also have a post-op appointment with Dr. T. I know he is going to propose doing a revision surgery, and I'm not at all sure how I feel about that. I guess I will at least hear him out and then reflect on it for a bit. Things are just so good right now, why mess with them? On the other hand... well, let's just say the other hand is overloaded.

Sunday, November 1, 2015

Let me tell you about Halloween in my neighborhood.

As an adult, I've never enjoyed Halloween. I outgrew my love of Halloween around middle school, some 25+ years ago. But now I live in a neighborhood where Halloween is absolute over-the-top insanity, and you really have no choice but to get into it, or leave town for pretty much the entire month of October.

There are thousands upon thousands of trick-or-treaters who come from all over the town to trick-or-treat in the neighborhood, and Halloween night is very much like a big carnival. Every year there is some sort of unofficial contest to see who can come up with the best decorations. Here are few examples from around the neighborhood.

This house was on the local news last year. They were filming right as we trick-or-treated, and my son, who was dressed up as Queen Elsa, walked right past the camera. People were giving me a hard time about the possibility of my son appearing on Fox News in a dress.  LOL.


This is my good friend's house - the forbidden forest from Harry Potter. We were walking home from my parents' house a few weeks ago, and my daughter wanted to take the long route home just so we could walk through the forest. Her husband was out working on it when we passed through.



This is a new display this year, and I think it's one of my favorites.



Even if you're too young to remember Thriller, the zombies coming out of the ground are cool. My son likes it.

A few weeks before Halloween, random 'booing' starts. This is when someone rings your doorbell and leaves you candy. (To clarify, 'you' = my daughter.) This one happened after my daughter was already in bed, so I took a picture of it for her because I didn't want to leave the candy on the porch all night.


I got more into Halloween this year, just because. Why not? By 'got more into it,' I mean that I let my husband go crazy without rolling my eyes every time he came home from Kmart with a new tacky decoration. However, I did decide to throw a pre-trick-or-treating party. Our friends started the tradition of 'soup night' years ago, and we used to enjoy going to their house for soup before trick-or-treating. Unfortunately, they moved out of the neighborhood, and I figured that someone should carry on the tradition. So I spent most of Friday and Saturday cleaning and cooking, and preparing my house to be invaded by 30+ people. Here are a few pictures, simply because my house has not been this clean and a very, very, VERY long time.

      


I had so much fun cleaning and cooking, even though even the most low-key parties are always a ton of work (and money!). In reflecting on it, I think it's because it was the most normal I have felt in over five months. It's the first real, get down on my hands and knees cleaning I've done in, like, forever. And I LOVED it. Cleaning and cooking and worrying about how all these people are going to fit into my house just made me feel like my life is normal again. There is a normal life to be lived past cancer. For two days, I hardly thought about cancer or surgery or what body parts were hurting. I just put my head down and scrubbed the toilet and scrubbed potatoes and stirred the soup. It was an amazing feeling.

When I was at BRA Day, one of the other patients who gave a talk was diagnosed with breast cancer when she was pregnant, and had a double mastectomy at 31 weeks pregnant. She had to wait until after the baby was born to do reconstruction, because being under that long might be bad for the baby. But one of things she said really stuck with me, and that is that she knew the reconstruction was a success because she never even thinks about it anymore. And I find myself having more and more days like this - where there is a good portion of the day where I just don't think about any of this stuff anymore. I just clean and cook and manage my kids and give out candy. It's a good feeling.


I think it might have been the best Halloween ever.