Complications and Postponed Chemo

So, are you sitting down?

No, really, this is going to be long and rather crazy. You want to sit for this.

Chemo has been postponed. We have a complication with the implants and I am not healing. I have a visible hole in my chest. (Say it with me now, "eeewwwwww!") Yep.

Today was Find a New Plastic Surgeon Day! I had two appointments scheduled to meet with doctors who might potentially take over my care since I was dismissed by Dr. Jacobsen last week.

My first appointment was with Dr. Khang Thai in Chandler. When I called to make this appointment, his nurse put me on hold to talk with him before scheduling me because it is such an unconventional thing to switch care providers in the middle of an ongoing procedure. He was willing to see me only because I was referred to him by Dr. O'Neill, but I could tell there was some concern and uncertainty over whether he would take my case or not.

My appointment was scheduled for 11:15am. We arrived a few minutes early to complete all the necessary paperwork and found only one other person in the waiting room. This was a huge change from Dr. J's over-packed office. This person was just waiting for the patient before me to be done; he wasn't going to be seen himself.

When I completed all the forms and handed them to the front desk staff, I was called back into a room almost immediately. It was 11:10. There was no multiple-hour wait to be seen. I was weighed and my blood pressure was taken - which has been done at every appointment with every doctor I've seen in the last six+ weeks with the singular exception of Dr. J. I don't think any vitals were ever taken there at any visit. (It's possible it was done at my first visit, but neither Dave nor I can remember it. I remember the interaction with all of my other care providers.)

Dr. Thai came in with his tablet computer and proceeded to take a very detailed patient history. He asked about my health both before the diagnosis and since the surgery. He asked about my healing, my activity levels, my mental health, everything. He was very thorough.

He asked why I was considering leaving Dr. Jacobsen's care and I let him know it was very much a mutual dissatisfaction. I explained that I did not feel my questions were welcomed, answered completely or taken seriously. I gave a few examples of when I felt I'd been dismissed (asking what level of fluid build up might be problematic and being told there would be no emergencies or complications, etc.) and he was quite understanding of why I might want a different approach to my care.

He said that due to the unusual nature of my introduction to him, he had spent time discussing my case with Dr. O'Neill yesterday and based on what she was able to tell him about my experiences to date and her interactions with me, he was willing to consider taking me as a patient.

He said that he had read over the post-op report from Dr. J and that he would have taken a somewhat different approach to begin my reconstruction. He said he would do the best he could to get me the best possible outcome, but knowing he was going in to finish a procedure that had not been started in the way he would have preferred to start, he could not make any promises.

I appreciated his honesty and candor and told him so.

In discussing what he might have done differently and what has happened in the last 3.5 weeks since my surgery, the topic of my sutures came up. He seemed surprised that I still had sutures in and I said that I hadn't even seen them yet because they were still under the steristrips. He said he generally removes all sutures about a week after the procedure because it minimizes the scarring and that he would take my sutures out today.

Additionally, when I said that at my last visit with Dr. J a week and a half ago we had begun the filling process of the expanders, he was quite surprised. He said he generally does not start any expansion until at least a month after surgery simply to allow more time for the body to heal on the inside before putting more pressure on it.

He was surprised at the combination of drugs I'd been given post-surgery and said the Torodol could lead to more bleeding and slow down healing, while the Valium decreased the effect of pain medications and was unnecessary for most muscle spasms.

In all, he would have taken a very different approach to my care so far, but I knew going in that every doctor does things somewhat differently.

After we chatted for a good half hour or so, he asked me to put on the gown to allow him to examine me and left the room. The gown was a simple white paper gown, not at all as fancy as the cloth drapes used by Dr. Jacobsen, but as I sat in the crunchy paper vest, I turned to Dave and said I would happily trade the pretty drape gown and fancy office for this doctor who took the time to ask me questions and to answer my questions and his simple paper gown.

Dr. Thai returned with his nurse (I had never seen a nurse in a procedure a single time with Dr. J) and asked me to stand. He checked all my visible scars - the lymph node biopsy site (with sutures), the drains, the On-Q cath holes, which all seemed to be healing well - and then started to remove the steristrips to examine the sutures across my breasts.

He did a little poking and prodding to determine where the implants are and was surprised at how firm and fluid-filled my left breast is. At this point, I am round and swollen completely under my arm and the bottom half of my breast is easily the size it was before my mastectomy - all from the fluid build up inside me.

Dr. Thai said that this indicated I was not healing as expected inside and might be doing too much activity. He said the more I move the arm, the more the muscles inside shear each other a bit instead of healing together and that's what leads to the fluid. He said he rarely if ever has to drain fluid from a patient and attributes that to the fact that he does not start patients on any exercises for mobility or expansion fills until they have had a month or more to heal. Dr. J had me starting exercises the day after surgery and we did our first fill 2.5 weeks after surgery.

As Dr. Thai examined the sutures, he was concerned about a spot on my left breast. He asked me to lay down so he could examine it more closely and began pushing and moving the fluid around a bit. When I winced, he immediately apologized and explained what he was doing. I thanked him for the apology and said that when I told Dr. J. I felt any pain, he'd always tell me whatever he was doing didn't hurt.

He examined the sutures on both sides and said that there was an open wound on the left side that had him concerned. He left the room to get a flashlight for a better look and as he returned, I was commenting to Dave that it sounded like I might not be starting chemo tomorrow after all. Dr. Thai confirmed this and said he'd talk to Dr. Obenchain (they know each other well and work together often - another bonus for him) to let her know of the need for a delay.

His concern with the open wound was that it might be "communicating" with the expander. He was unsure if the expander itself was visible through the wound (it's not completely covered by the chest muscle) and if he could push fluid out through my sutures, he would know we had a problem.

As he gently pushed, he apologized again for making me wince, and then asked for gauze to mop up the fluid coming out of my chest.

Damn. (He even had the nurse bring a mirror over so I could see the wound for myself. Yay.)

So - what does this mean? Unfortunately, we don't know exactly. He hasn't been inside my chest, so he doesn't know the exact lay of the land, so to speak. He said the biggest danger is that if anything can come out, that means anything can also get in. And the fluid inside my chest cavity is rich in nutrients that bacteria love. If I get an infection, the entire expander has to come out and I may not be able to ever have implants.

He said there is also a risk that the fluid in my chest is there because the implant itself has been compromised and is leaking. This is not an immediate danger to me because the fill was only of saline, but it does mean the expander is useless for its intended purpose and will have to come out.

So - our first step is to postpone chemotherapy for at least a couple of weeks. During that time I will be on antibiotics to make sure I don't get an infection and we will wait to see if my chest heals on its own. I will also have an ultrasound in the next few days to monitor the level of fluid in there and determine how it can best be removed to relieve my discomfort and pressure without risking puncturing the expander. (Dr. Thai said he never removes fluid in the office with a needle because there's no definite way to make sure you don't compromise the implant.)

Moving forward, this gives us three options. Have fun with the folowing decision tree!

Outcome 1: In ten days, when I return to Dr. Thai, the open wound will have healed of its own accord. We still won't know exactly what the situation is with the expander, but I will be cleared to start my chemotherapy barring any other complications.

Outcome 1a: Healed, do chemo, start expansion during or after chemo, finish reconstruction with permanent implants, no further problems.

Outcome 1b: Healed, do chemo, start expansion during chemo - if the expansion does not "take" because the expander is punctured or if the skin reopens at the scar site - which is a possibility that makes me shudder at the thought - we will likely have to do surgery to remove the expander during chemo treatment. This is possible, but not at all ideal as my immune system and healing will be compromised by the chemo treatments and surgery will only be done if my white blood cell count is high enough. He pointed out that if the skin reopens on its own in a dramatic fashion (ugh ugh ugh) we will need to do a fairly emergency surgery to remove the expander and close the wound. Dislike Outcome 1b.

Outcome 2: In ten days, when I return to Dr. Thai, the open wound will not have healed of its own accord, but will not be any worse either. We won't know the situation with the expander and we will need to have a conversation with Dr. Obenchain to determine how urgent my chemo treatment is. If she feels we really need to start sooner rather than later, we will schedule a surgery for Dr. Thai to open me up and take a look at what's happening in there and why I might not be healing as expected. If she feels we can continue delaying chemotherapy a bit, we will give the wound another week or so to see if it heals on its own. Return to possible Outcome 1.

Outcome 3: In ten days, when I return to Dr. Thai, the open wound will not have healed of its own accord and will in fact be doing worse. If this is the case, we will schedule a surgery immediately to determine what is going on with the expander and it may need to be removed. If it is punctured, it may simply be able to be replaced. If it is compromised in some other way that indicates my body is rejecting it and thus not healing, it will be removed and I will not have implants. We will consider other reconstruction options (transdermal flap procedures - essentially moving muscle and fat from my stomach, shoulder or backside to create breasts - all MUCH more invasive and serious procedures) several months down the road after my body has healed and I have completed chemo.

Outcome 4: If at any time during the next 10 days I notice the breast getting red, hot to the touch, develop a fever or show any other signs of infection, we will go immediately to removal of the expander and there will be no implants. SERIOUSLY dislike Outcome 4.

So - didja get all that? Turns out the firmness and discoloration I've had in the breast since I last saw Dr. J is a sign that something IS wrong. The increased pain of the last week? That's a sign. The open wound in my chest that fluid can come out of? Big sign.

And that last one is a big sign that we never would have discovered before chemo if I hadn't written the CaringBridge update about what an ass Dr. J had been, if he hadn't read the update and then dismissed me as a patient. I would have started chemo tomorrow morning assuming I was healing fine because he told me I was and he told me to trust him.

Yeah.

It sometimes sucks being right all the time. This is now the third time I have tried to bring up concerns to a doctor about my body and been told everything was fine when it wasn't - when I was in labor 6 weeks early with Fin, my water broke and I suddenly had a preemie baby an hour and a half later; when I felt a lump in my chest for 18 months before it was diagnosed as three cancerous tumors; and now when I was concerned about the fluid build up and discomfort in my chest which apparently has had an open wound hidden under (crooked, ugly) sutures and steristrips.

As for the wound itself, we don't know what caused it - whether the fill last week put too much pressure on the skin and it opened at the surgery site, whether I have done too much activity in the last few weeks instead of taking it easy, or whether it simply just never grew together as expected after the surgery last month.

But going forward, I have very simple instructions from Dr. Thai: take the antibiotics, keep the wound site clean and dry, keep wearing the compression vest to minimize fluid build up, get the ultrasound and have the fluid drained there, and then - DO NOTHING.

I am not allowed to walk in the mornings (too much arm swinging motion will keep the muscles shearing instead of healing). I am not allowed to do any housework - laundry, dishes, vacuuming, mopping. I am not allowed to lift anything heavier than a few pounds and should not even lift a gallon of milk. I should not carry anything with my left arm and need to be very aware of what I'm carrying on my right side. I need to be aware of all movements and know I need to heal.

Because not taking it easy now means I may very well end up with another surgery - which means even MORE required nothingness later. Blergh.

Yep, my doctor says I pretty much have to be a couch potato for the next two weeks.

So - all of you who have said you are willing to come over and help out? Yeah, let's do that. Want to bring a movie and snacks and make sure I'm not picking up toys when no one is looking? Come on over!

I am still allowed to drive some and I can go to work, but I need to be aware of how much moving I'm doing and it might be easier to work from home more often than not in the next couple of weeks. I may need lunch buddies to come visit me at home and provide some outside interaction so I don't lose my mind (and you can police me to be sure I'm not putzing around and doing housework...)

Overall, I really like Dr. Thai. He apologized for being the bearer of bad news, but I am very thankful our paths crossed and he was able to find this complication before it got worse.

I do still have appointments with a couple of other plastic surgeons for second opinions next week, but I am uncertain whether I will keep those appointments. On the one hand, I didn't shop around earlier with Dr. Jacobsen, despite having some warning flags go up at our initial visit, and look where it got me. (In my defense, he and Dr. O'Neill had already scheduled my surgery and I just wanted the cancer OUT of me. I figured all plastic surgeons would be that schmaltzy and glib. I was wrong.) But on the other hand, Dr. Thai has already spent more time talking with me and examining me in one visit than Dr. Jacobsen had in four. He was thorough in his examination, honest about what he couldn't promise me, and open to any questions I had.

Furthermore, he asked to read the letter from Dr. Jacobsen dismissing me as a patient and when I said I was happy for him to visit my CaringBridge site to learn more about me as a person and a patient, he actually wrote down the address and said he'd check it out. (Hi, Dr. Thai!)

So - yeah. My head was spinning for several hours today trying to process everything. Obviously, all of this is cosmetic and the cancer is out of me. Our priority is still making sure we do everything we can to minimize the chances of the cancer coming back, so we need to clear up this cosmetic stuff as quickly and reasonably as possible. Yes, I would like to have breasts again and I would like for them to look nice and I would like to have as few surgeries and procedures to make that happen as possible. But ultimately, if we have to take the expanders out now - or even just delay the fills and final implants - I can get breasts again at some later date.

My life would be boring if it all went as planned. :)

On the way home, Dave asked why things are never easy for me. And it's because I can handle the hard stuff. And while this little detour isn't desired or preferred, ultimately, I'm still doing great. We got the cancer out of me, we got it early, it hadn't spread and I am working my way back to healthy. Healing may be taking a bit longer than we hoped, but it will happen, with or without booby implants.

I just have to get better at doing nothing. Advice and policing from loved ones is appreciated.

Oh, and if you're the praying kind and/or want to put positive juju out there for me, let's all close our eyes and throw some pixie dust out for Outcome 1a!

<3
-B-

What To Do With Down Time? Oh, Wait...

...and now there's a lull. For the first time since I was diagnosed with breast cancer - 6 weeks ago today (has it really only been 6 weeks? And at the same time, has it been 6 weeks already???) - I have some time when there are no doctor's appointments, no procedures, no bloodwork or lab tests to be done.

My last plastic surgeon visit was Aug 30th and I start chemo on Sept 9th, so there's a good ten days where all I'm supposed to do is continue healing and improving and getting stronger for the rest of this journey.

I'm not sure I do well with down time.

I went back to work this week, trying to get some normalcy and routine back into my life. But no one really expected me to be there, so there wasn't a whole lot to do right away. I found ways to keep myself busy, of course - did some organizing and catching up on projects - but they weren't my most productive days, in part because I couldn't quite figure out what to DO.

And both days I've been back at work so far, I seem to have hit a wall around 3-4pm. Yesterday I was sitting at my desk going through files and suddenly at 4:15, I felt like I could barely hold my head up. I honestly debated whether I was awake enough to drive myself home. (I was, but it took more concentration and effort than the commute usually does.)

On Tuesday, I left work around 3:30 to come home and grab a nap before the kiddos got home from school. I felt fine by the time they came home and we spent the evening over at my mom's, but then I couldn't sleep at all that night. So yesterday, despite barely being able to stay awake for my commute home, I didn't let myself nap.

Dave had taken the kiddos out to his dad's for dinner so I could rest in a quiet house, which I appreciated, but I also hate not getting to see the kids. I did actually get to help with bedtime last night, for the first time in several weeks, which was nice. And then I crashed for a good 9 hours.

I woke up several times to try to decide if I was up for some exercise before it got too hot, but I ultimately decided I needed sleep more than I needed to go for a walk. Now, if I knew I'd be able to run instead.... but no. Not healed enough for that amount of impact yet. Bah.

So I'm spending part of this lull trying to figure out how to deal with the late afternoon wall of exhaustion that completely wipes me out without causing insomnia later and tossing and turning until 3am.

A few nights ago, when I was too tired to help Dave get the kids to bed, I grabbed one of the cancer books a friend gave me and started flipping through it. I figured I was relaxing in bed rather than chasing the kiddos around, but I was still awake and able to interact with them when they ran into my cancer-be-gone healing room.

The book itself seemed fine - entertaining, informative, some good advice on how to approach cancer treatments and side effects - and then the house was quiet and I was exhausted and quite happy to turn out the lights and go to bed. Except once I had cancer advice in my head, I couldn't shut it off.

I honestly have not been too concerned about losing my hair to chemo. I had a super short pixie cut for years that would quite often have people stopping me on the street to tell me how great I looked. I just spent the last 2 years growing that style out, which is a bit of a pain in the ass, but at least I know I can rock the short styles as my hair comes back. And my oncologist actually told me that with my particular chemo cocktail, not everyone actually loses all their hair. Some people just have thinning. I have incredibly thick hair, so I could definitely get away with some thinning and not look like the typical cancer patient.

Because I had short hair for so long, this has been the first summer in many, many years that I've had to deal with any hair falling on my neck. It's been a weird sensation and I typically find myself lifting my hair off my neck to be able to fall asleep at night.

When I couldn't fall asleep the other night, thinking about tips on wig shopping and bra shopping while in treatment and during reconstruction, I realized I just kept adjusting my hair on the pillow to try to get comfortable.

Comfort at night is still a big issue since my surgery. I've been a lifelong belly sleeper, much to the dismay of my chiropractor, but for almost 3 weeks now, I've been flat on my back propped up on at least 4 pillows here and there. I am SO ready to at least roll on my side for a while, curl up in a little ball, snuggle again... but that's extremely painful. So instead I adjust the pillows again, kick the blankets out of the way, move another pillow under my knees, adjust the stuffed hedgehog under the other arm (it's really nice how he's shaped like a football and fits right in the crook of my arm to keep anything from resting too heavily on the sore spots)... and try to fall asleep on my back again.

So as my mind is whirring with cancer advice and I'm tossing without turning as much as possible, I realized just how much I was adjusting my hair off my neck. My first thought was, "Well, if I go bald, at least I won't have to worry about the hair bugging me when it's hitting my neck at night." But then I realized I really will miss my hair. It's incredibly thick and really, really soft. When it was short I had to use a lot of styling products, but now that it's grown out again, I honestly wash it and walk out the door - no products, no styling, no drying or straightening... it's just good hair.

Honestly, if you see me before I (maybe) go bald, feel free to touch it. There's a lot of it and it's soft and I don't mind people petting me. But once I start chemo, if you see that I still have hair, keep away from it. I don't want to lose it if I don't have to, despite all my talk of being confident that I will be a hot bald chick.

So this is where my brain turns when I can't sleep - what if I lose my hair and I'm NOT a hot bald chick? What if I'm just one more cancer patient who looks sick? And once I'm (maybe) bald, will I really have to start wearing makeup to NOT look like a cancer patient? I hate wearing makeup and try to only do it for really big events, maybe 3-4 times a year. If I start wearing makeup now, will I ever stop? And what's wrong with looking like a cancer patient when I AM ONE?

Oh, right, people stare at the sick and frail and worry that it's contagious and avoid them. And if I'm not feeling sick on a given day, I certainly don't want to LOOK sick just because the poison I'm pouring into my body makes me lose my hair.

Crap.

This is not what I should be concerned about. This is not where my mental energy needs to be going. I have a million and a half other things I could and should and want to be thinking about. But it's 1 am, I'm tired and I can't shut it off.

And what if my hair comes back completely different? I know it's vain and kind of stupid to worry about, but I've kind of always had good hair. Not every single day, obviously, but as a general rule, when I was loathing other parts of my physical self, at least I could count on my hair generally looking good.

********

And now the lull is over. I started writing this post this morning before the kids were awake, just navel gazing and thinking about cancer and hair and other stupid shit.

I've had a sore throat for the past two days, so I decided to work from home today rather than expend any energy on the commute. The kids are in school and Dave spent the afternoon working at his mom's today, so I have actually had a rather productive day.

While Dave and I were having lunch before he headed to his mom's place, the doorbell rang. Neither of us were expecting anyone, so he went to the door.

When I saw him step outside to sign for something, I followed, curious as to what it might be.

We got a certified letter. From my plastic surgeon, Dr. Jacobsen.

Apparently, my writing here on my own personal CaringBridge site which is for my own healing and processing and venting about my cancer journey to my friends and family who love me and want to know what's going on in my life - this counts as a public forum. And because I have made it apparent through my "strongly worded criticisms" about his care that I am "significantly unhappy" with him, he is no longer going to continue my surgical care. Unless I give him a formal apology, which he is glad to accept.

On the one hand, I certainly did not intend to hurt his feelings with my ranting here to my friends and loved ones. But on the other hand, as a patient, I don't think my expectations were out of line and he certainly wasn't providing the type of care my other two doctors have been.

So I have contacted my other cancer doctors and gotten referrals for new plastic surgeons. And I've been given referrals for other plastic surgeons from friends as well. Now I just have to find a doctor who I like, who is comfortable providing information and answering questions, who wants to be a partner in my ongoing cancer care rather than expecting to drive the bus and just have me go along for the ride - who is also willing to accept a "problem patient" as I am now obviously labeled and to finish a job started by another surgeon.

It seems when you take a car to a mechanic, it doesn't much matter who you go to when it comes down to actual ability. But I'm guessing the human body is a bit different. This is the man who started this job and has actually been inside my chest putting things in there for me to keep forever, and I have no idea whether it's easy or dangerous or even likely that another surgeon will want to finish the job.

I never once doubted Dr. J's ability as a surgeon, I do want that to be perfectly clear. That's the only reason I went back to him after he referred to his patients as "the ladies" the first time I met him. But he wasn't meeting my expectations when it came to being able to answer my questions or even really feeling respected as a patient in his office, so I suppose this is a good move for both of us.

But of course, I'm now the one who has to find a new surgeon mid-way through cancer treatment.

Did I say I wasn't good with down time? Lull over. Back to busy. Whew.

<3

-B-

Anger is Part of the Healing Process

Today I feel betrayed. Pissed off and betrayed. I know it's not true (gotta let that rational mind speak for a moment, but the rest of this is going be a free-for-all of irrational ranting at the universe... there's your warning for this journal entry.)

...I know it's not true, but today I feel like my body has failed me.

For the greater part of my life, I have not been in love with the way my body looked, but for the most part I could focus on the body as process and be proud of the things I could DO, on the function and ability and health of my body. And there have been a few times in my life when I was really proud of both the form and the function of my body - first when I was doing yoga and pilates 5x a week - this was when I first realized I was and could be physically strong. And more recently when I started running and was amazed that for the first time in my life I was actually involved in a sport/activity that was challenging and I did it because I loved how it made me FEEL rather than worrying about whether or not it would make me look better. People were amazed that I willingly woke up at 4-4:30 most mornings to run before the day got too hot, and I know if I woke up those days and thought, "I have to go for this run or I'll feel fat" I wouldn't have gotten out of bed most of those days. But the fact that I got trim and toned from doing this activity that made me mentally and emotionally feel stronger too was just an incredible bonus.

I felt like my body was really doing and looking pretty damn good. Especially for a 35 year old mother of two.

Then - dun dun dun (yes, that's music, trust me) - CANCER.

And for most of the last 5.5 weeks since my diagnosis, I have still been proud of my abilities. We got the cancer early and got it out. I was healing well, had my range of motion back immediately, felt pain, but nothing too extreme or really even requiring too many medications.

Last Monday the drainage tubes came out. Dr. Jacobsen said I could wear my (incredibly uncomfortable and hot - temperature-wise, not sexy) compression vest a bit less, but I was mostly just looking forward to NOT wearing it to the VL32 orientation event on Wednesday evening.

As I was getting in the shower on Wednesday, a day I remember as being particularly high in "wow, my post-mastectomy body is pretty cool looking!", I noticed my left side was a bit... squishy. I called Dave in to look at it and asked him to email the doc about it. Dr. J had warned I might get a little fluid build up after the drains were removed and he'd just drain it off at our next appointment on Monday (ugh, the thought of what this procedure might entail just makes me queasy) but once I saw the squish, I realized I had no idea what constituted a little fluid build up versus something to worry about. And whether or not it was concerning that I already had fluid build up only 2 days after the drains were out or if I'd need to be drained (uuuuuugh) before a week had passed.

And then of course, I had to wonder if this meant I would need the drain put back IN. Even more ugh, and possibly some almost-vomit at this thought.

Dave sent an email to the doctor, I showered, went to my event sans-vest and had a great time. When I got home, the doctor had replied that I should just keep the vest on and he'd see me on Monday as planned.

Since then, the fluid build up has continued. I still have no idea whether it's a normal amount of build up or not, but when I woke up this morning and realized my left arm feels like it weighs 30 lbs and my fingers were going numb from having my arm curled around a stuffed hedgehog, I had to wonder if all this fluid might be pressing on a nerve or something. I have not taken the damn vest off for longer than a shower in 4 days, so I haven't been checking the progress of the build up too much, but just from the different ways I have to adjust the compression pads in there now, I know things are different and not so cool.

So this morning Fin asked for banana bread for breakfast. This is one of those foods that is right on the line of being dessert or an acceptable breakfast food, but I agreed with him that it sounded good this morning, so I said I'd get some for both of us while Dave and Greta went on a bike ride. I sliced a couple of pieces of homemade (Thanks, Jean!) banana bread and turned to get plates from the cabinet... and realized I couldn't reach to the top shelf with an arm that felt like a lead weight.

I got bowls from the bottom shelf instead and cut the bread in half so it would fit, which of course then led to a hysterical screaming fit from Fin because he didn't want his cut and he didn't want a bowl OR a plate and daddy let him just eat it in the living room from his hand and it was unfair that mommy said he needed a bowl and he wanted a piece that wasn't cut anyway and and and... and I grabbed the bread and threw it across the table.

The mommy guilt over not being able to interact with them regularly has been growing steadily for the last 2+ weeks. I'm either too tired or unable to pick them up or just don't have the physical capacity to help them build forts (can't lift couch cushions) or push them on the swing and even when they just want to crawl in my lap for a book or want to play tickle monster... I have to be so cautious that most of the time, they'd rather just play with Daddy anyway. I used to be their favorite, at least some of the time.

Stupid fucking cancer.

So after Fin and I got our yelling at each other done and he decided he really DID want a piece of banana bread cut in half in a bowl (yep, Mommy's right again) I realized I should shower while he was momentarily entertained by Wall-E.

Since the drains came out almost a week ago, I have been aware of the pains from the drains (and I like to rhyme some of the time). I haven't spent much time checking their healing because, well, I've been keeping the vest ON as instructed, and because honestly, they're hard to get a good angle to see. I can feel them, but I'm never sure if what I'm feeling is... scabbing?... or leftover adhesive from the bandages that ripped off skin every time I changed them. Either way, I didn't want to pick at them too much.

But today I was concerned about my healing - between the squishiness that actually almost looks like a BOOB when I have the vest off and the numbness and lead-like feeling of the left arm, I figured I should make sure the drain spots weren't getting weird on me, too.

So as I prepared for my shower this morning, I tried to get as close to the mirror as I could with the bizarre angle necessary to see the side of my ribcage while holding up an arm that is unnaturally heavy at an unnatural angle. I was pleased to realize that the drain spot is actually smaller than I'd been thinking it was and most of what I was feeling really was just leftover bandage adhesive on my very sensitive and tender skin.

But as I tried to carefully clean my skin before the shower, I realized that this particular position also gave me a very good and up-close view of the scar from the lymph node biopsy. Dr. J had removed the steristrip bandage from the lymph node area at the same time as the drains, but again, it's a part of the body that is just kind of hard to see unless you make an effort. Obviously, I could see and feel the scar from one angle (hmmmm, how close does one want to shave her armpits to a healing scar???) but seeing the actual scar in the mirror up close was a bit surprising.

It is much longer than I thought. And the stitches are dark black, the skin between stitches is angry and red (though not infected looking in any way, I just know I tend to get keloid scars - fun) and it's about 3 inches long. And it will almost always be visible in any tank top or cap-sleeved shirt for the rest of my life.

And of course I realized that once the steristrips are off my chest, I will have similar ugly and angry welts and stitches and scars that cover almost the entire span of my chest. Dr. J can tell me until he's blue in the face that my new breasts are going to be perfect and absolutely beautiful, but I've seen too many pictures of reconstructive surgeries and had a few too many survivors say things like "My new boobs look great with clothes!" or call their tattooed nipples "Pepperonis" to know that they will never really look like I want to imagine they will again.

And I know I'm cancer-free and healing and appearances don't mean shit, but damn it, I have to go through all this and will never feel my nipples again and the scars are just too big and too ugly and too REAL today. And I want to fucking be able to feel my left arm and not have it go numb from holding up a book.

And I got into the shower and cried for the first time because of how my post-cancer body looks. Because I haven't run in over two weeks and I already feel like I've lost my muscle tone and shape. I don't have anything close to runner's legs anymore (they were just barely starting to show up after running for two months) and I just feel squishy and flabby all over. And too sore from healing to get back to working out again.

And I know I'm healing and that's where my energy needs to be going, but I really considered just going out for a run today anyway because I can fucking handle physical pain, but I'm not sure I can handle the mental and emotional crap without some release. But I knew that wasn't rational, so I just cried instead.

And I skipped the birthday party because I knew I would be no help at Chuck E. Cheese when I couldn't pick up the kids or play any games. And I called my amazing friend Steph and she let me yell about all the things that were making me mad and she made me admit what I was REALLY mad about and who I was really mad at and what I could or should be doing to get the help and support I need. And I was hungry and unable to make myself lunch and I hated it, but I called my mom and sister to ask someone to come bring me food. It was one of the hardest phone calls I've ever had to make.

If it's this hard for me to ask for help from my FAMILY, I am in trouble. And I'm not even really sick yet. I am angry that I got cancer at 35 - I was plenty busy with my life before this. I am angry that a body I was taking damn good care of decided to go bad on me. I am angry that the doctor keeps telling me everything is fine, but I can barely use my left arm and I don't know if that's normal or a problem that needs to be addressed before tomorrow (he hasn't returned this morning's email yet). I am angry that my house is a mess and I'm not allowed to clean it up and I'm angry at myself for doing it anyway.

Today 3 different friends called up out of the blue to ask if they could bring something by to me. I told them all no because I was in such a bad mood and the house was too messy to let anyone see it. But I can't clean it, either. And a 4th friend just showed up at my door unannounced with a giant basket of gifts from my work friends that is too heavy for me to lift (even if I was allowed to lift things, it's a big heavy basket).

And I realize that even when I'm so damn angry at the universe because I can't make myself a fricking sandwich and can't reach the plates because I got CANCER...

people love me and want to help and are thinking of me. And I HAVE to get better at letting them and asking for what I need.

WHY is this so hard for me? I HATE that my sister had to come over to make me a grilled cheese sandwich today. But I love that she did it at the drop of a hat. And she took out the garbage and cleaned the table off while she was here. And then my mom showed up to help Dave with the kids after the birthday party. And I got brave enough to call one of my friends back and say she could bring dinner over after all - because she won't care if the house is messy, she just wants to come hang out with me.

I am working to deal with all this crap. And more crap that I'm not posting about because it's just too damn much on top of cancer already. I am really, really hoping that whatever draining needs to be done tomorrow isn't as bad as I think and that I get the feeling in my arm back soon.

Because right now, it's just pissing me off. And anger doesn't make healing any easier. But love from you guys really, really does.

<3
-B-

Making Plans for Poisons!

Those of you who know me well will hear the joy as I type the following: We have a plan!!!!

Granted, the need for a plan and most of the reality of carrying out the plan both suck, but we have a plan and that means so very much to me and makes me happy. :)

Today was oncology day. I got to have my first cancer-free, boob-free visit with Dr. Obenchain, who I was reminded yet again is an amazingly supportive and caring woman in addition to being a really good doctor.

Dave and Laura (husband and great friend/cancer sister, respectively) joined me for this visit to hear the recommendations for my ongoing treatment. Dr. Obenchain went over the same test results we'd heard from Dr. O'Neill a couple of days ago and focused on the fact that now that I am now cancer-free (Yay! Never gets old, does it?) there are things we need to do to increase my chances of staying that way.

She confirmed that I had three tumors in the left breast, with the largest being only 1.1cm - all in all, quite a good outcome for breast cancer if you have to have it. (Which I sincerely hope you never do, of course.) Adding in the negative lymph nodes and the tumors being hormone-positive, I have quite a few reasonable treatment options ahead of me.

Luckily, one of Dr. Obenchain's roles is to provide information on the odds, the pros and cons, of all of the treatment options. This means numbers and statistics for me! Again, yay! (LOL - Ever the dork, right? Finding joy in the numbers regarding my cancer odds...)

Using the computer modeling and all the relevant info about my tumors, their aggressiveness, size, lymph nodes, hormone tests, genetic tests, and the kitchen sink, Dr. Obenchain let us know that if I did absolutely nothing else to treat my cancer, I should have a 75% chance of remaining cancer-free for the rest of my life.

She told us this news and said it was good news. But of course, what I heard her say despite her actual words was, "You have a 1 in 4 chance of getting cancer again."

She immediately stopped and laughed at the fact that Dave and I had completely different facial reactions and responses to hearing those odds. He heard the 75% and I heard the other 25%. So of course, I said 25% was not good enough for my two little people at home, so I absolutely will be doing more to reduce those odds.

Because my tumors are hormone-positive, which is apparently rather rare in young pre-menopausal women, this allows us a treatment option that is quite good. Depending on how we choose to attack the natural hormones in my body that serve as food and fuel for my cancer, we will either block the receptors of any cancer cells that may not yet be detected or may have been missed, or we will make my body stop producing the hormones altogether. Either way, I will experience menopause; it's just a matter of whether or not it's permanent, with which I would be fine. My two amazing kiddos are all I plan to have anyway.

The particularly good news from this conversation is that even if we decide to go the route of permanent menopause, there may be ways to do it without another actual surgery to remove my ovaries. We may just be able to chemically turn them off - which of course kind of makes me think of just making them shrivel like raisins in my body, but that's kind of an icky visual, so try not to think about it. (Easy, huh?)

And we will make more detailed determinations on the hormone therapy once we get through the chemo part, but the statistical modeling suggests that doing just the hormone treatment alone would reduce my risk of future cancers from 25% to 16%. Definitely an improvement, but still not a number that makes me too incredibly happy.

So we discussed chemotherapy options. Dr. Obenchain was very honest and informative about the short term effects and possible long term effects of putting poison in my body. Most of the short term ones are fairly well known, even though they do not necessarily happen to everyone with the same severity or at all: hair loss, short term memory loss, nausea, weakened immune system, possible mouth sores, dry skin, lots and lots of fun things. The long term effects are much less likely to occur, but quite a bit more serious: approximately a 3% chance of heart failure and a less than 1% chance of actually causing another cancer such as leukemia by the treatment itself (which did actually happen to my grandfather after his colon cancer treatment).

With my young age and good health, however, Dr. Obenchain said she believed that my own actual risks are lower than these statistics because these include cancer patients of all ages and those receiving much longer and stronger forms of chemotherapy.

Adding chemo to the hormone therapy should reduce my risk of future cancers to only 10%, which is actually not too much higher than the risk for any average person on the street who has never had cancer. Please think about that for a moment and make sure you are wearing sunscreen and getting your recommended health checks. Breast cancer is 1 in 8 for women while prostate cancer is 1 in 5 for men. Seriously people, pay attention to your body and catch any cooties early and before they catch you!

We discussed many more details about which chemo drugs she would recommend based on my pathology and it turns out she would not be using drugs that require a chemo port. Yay again! One less procedure, one less scar, one less place on my body to be sore and prone to infection!

She told us to consider our options and let her know which route we were most comfortable with, but I told her quite honestly that I want my future risk number to be as low as possible as soon as possible, so I am fine with the short term effects and long term risks, especially if it means "long term" will have a much greater meaning to my life.

So I'm all in for chemo. She told me to pick a day between Sept 9-17 to get started (about a month after the surgery to allow for more healing) and I'm ready to get this show on the road. I will have only 4 chemo treatments (the minimum) at three weeks apart to allow my body to recover and my immune system to rebuild a bit between treatments. I came home tonight, pulled the calendar off the wall and figured out that if I start on Sept 9 or 10, I will be done by mid-November. I will probably still be recovering from the cumulative effects of the chemo exhaustion around Thanksgiving, but I should be back on my feet in time for Greta's birthday at the end of November and Fin's birthday two weeks later.

Yes, I will be bald in their 3 and 5 yr b-day pictures, but I will be there and will be in the photos from many, many more of their birthdays as well. And because we can finish breast reconstruction 3-4 weeks after chemo is done, there's a chance I'll even have my new boobs in time for Christmas! (Though I will have to consider NOT being in recovery from another surgery over the holiday, too...)

We will likely start the hormone therapy with the new year and my plan is to be completely DONE with cancer and treatment before my 36th birthday in May.

When I laid all this out to Dr. Obenchain, she just looked at Laura and they both cracked up about what I planner I am and how I was ready to get the show on the road.

So - that's the plan: start chemo in about 2 weeks, have the usual ups and downs for about 3.5 months with that fun, be a bit recovered for the kids' birthdays and the holidays, then kick off the new year with more insurance toward keeping cancer out of my life for good. And really, what better New Years Resolution can you think of than "Keep Cancer AWAY"?

The next several months will not be easy and they will not be fun, but I am not scared of what's ahead of me. Every time my gorgeous Greta giggles or my sweet Finny gives me a gentle hug and says, "Love you mama" I know I would endure anything to be around them as long as I possibly can. There's no way any nausea, baldness or exhaustion will keep me from doing whatever it takes to make myself as healthy as possible for as long as possible.

Interestingly, when I have told a few friends and family members about my plan - with all the joy I have mentioned having about simply having a PLAN in place - I have been met with responses of, "Are you okay with that?" or "Wow- you really have to do chemo?" or "How are you doing with that decision?" And it surprises me every time. Because I know this plan is a hard one, I know I will have some really sucktastic days in the next several months - but I also know that I am surrounded by family members and friends who are forever checking in on me, asking how they can help and offering me love and support from all over the world. Add that to my babies and I can do anything.

Which reminds me of something I don't think I mentioned when I updated after surgery a few weeks ago. When I was wheeled into the operating room, I was greeted by the anesthesiologist and Dr. O'Neill. The anesthesiologist (Dr. Rahman, I think, but I really only chatted with her briefly - she was very friendly) asked if I wanted to sing along with some Adam Lambert that was playing. Then the nurse asked if I could move myself from the wheeled bed onto the operating table. I confidently said, "Sure - I can do anything." I moved over, they told me to put my left arm out on the side table and that's the last thing I remember until I was waking up and taking a peek under the sheet covering me to see what I looked like with no boobs. These are honestly the last and first thoughts I have around the surgery blankness and I love that the last thing I remember saying when I actually had cancer was "I can do anything."

Hells yeah.

So that's obviously still my approach and I hope I will remember it on the days ahead that will be tougher than the ones I've had so far. Recovering from surgery has not been a blast - after a long day yesterday, I was so sore and in so much pain that I tossed and turned (as much as one can when you can't really roll over at all - I basically just kicked at blankets and pillows and yelled about cancer being stupid) until after 2 in the morning. But even with today being my most painful and exhausted day of the last two weeks, I know the road ahead will take me through even more of this crap. Unfortunately, this is just the start of this journey.

I really thank those of you who are by my side now, who know how sucky this will eventually be and who will be there to help me through the worst of it. I can't imagine my life without you and I know I am loved and blessed to have such incredible support through this journey and all the hard things and happy things in my life. Thank you.

<3
-B-

Nine Days Post Surgery - Time for Follow-Ups

The past two days have been crazy busy, so this is probably going to be a crazy long entry. You've been warned. So go pee now, grab a drink and get comfortable.

I had my second follow-up appointment with the plastic surgeon to check my healing yesterday, I had my first follow-up appointment with the breast surgeon today to get the results of all my pathology tests and the final surgical outcome and recommendations and I spent a good chunk of the day in the hospital at my grandmother's bedside as we feared she was having another heart attack. I also got to drive myself somewhere for the first time in almost two weeks! The newfound freedom was nice, but still rather painful... amusingly, I only drove myself a few miles to the hospital to see her.

So from all of this, there is both good news and bad news.

First, the good news about Grammy - they have determined that she has not had another heart attack (she had a quintuple bypass about a dozen years ago and a severe stroke almost a year ago), but they are keeping her overnight to monitor the pains in her legs and make sure she has not passed any blood clots or the like. She is lucid, but in pain and she will hopefully be home tomorrow.

And now for my own medical updates - I know you're all waiting with baited breath...

Dr. Jacobsen is my plastic surgeon in the fancy schmancy Biltmore office. He checked out my recovery at 10 days post-surgery and said I was doing absolutely great. Then he yanked the drains out of my sides. It was quite a relief to have them out, and it only REALLY hurt for a few seconds on each side, but I did almost vomit on him for the second one. Luckily, he was prepared with a cool washcloth and a bottle of water, so I didn't actually puke. Always a bonus.

He said with my fitness level before surgery, my "amazing skin" (uh huh, his words) and the progress I've already shown with my mobility and range of motion and flexibility, he expects me to continue healing quickly and without issue. And he assures me my new boobs are going to look great. He'll start the expansion process next week and says I should see some cleavage in about a month or less. This will be a first for me...

Granted, I am still in quite a bit of pain as my body heals internally and gets used to the foreign objects that are now a part of me, but he says everything I'm experiencing is normal and will fade over time. This is good news because I often still feel like there's an ice pick in my left lung and like my right shoulder blade has completely dislocated. Apparently, those feelings are to be expected after having one's boobs recently cut off.

So, leaving the plastic surgeon's office with only four bandaids to show for a recent mastectomy was a pretty cool feeling - one on each side where the drains had been and the steristrips that are still over the healing former breasts. But having the drains gone was the best part of that experience. And the pre-visit codeine I'd taken in preparation for the drain removal wasn't too bad, either. Surprisingly, he did tell me that at this point I can pretty much be off all my medications and return to my life as normal and just know that my body will tell me when I have done too much and need to rest.

Hmmm - this somehow makes me feel like I shouldn't still be so tired and exhausted and in pain all the time, but then I remember what a crazy surgery I just had and try to cut myself some slack. I'm working on it and am occasionally successful.

Today, after making sure my grandmother was resting as comfortably as possible, I made my way to visit Dr. O'Neill for the results of my surgery and pathology tests.

The best possible news is that the largest of the three tumors was only about 1.1cm and the permanent lymph node stain confirmed that there was no lymph node involvement or spread in the cancer, so we caught this stupid thing at Stage 1! WoooHooo!

I just stopped typing to get my copy of the entire pathological report and read over the relevant information to share. As I held these papers in my hands with their medical terminology and graphic descriptions of tissue samples, exact dimensions and appearance of these tissues that were once a very integral part of my life, I am emotionally conflicted. Mostly, I am happy that the news in these reports is good - my cancer was small, we caught it early and we got it out of me. My genetic testing does not indicate an increased risk for my mother, my sister or my children to share this illness with me. But a tiny part of me is sad that even my formerly healthy right breast - the bad booby by association - spent it's final observation as only "specimen with a long single suture designating lateral and a short double suture designating superior...at the center of the specimen is an ellipse of pink-tan skin with a central nipple measuring 1.2cm x 1.2cm x 1.2cm and inked as follows... The nipple and skin from the right breast are unremarkable." (Personally, I think the symmetry of that nipple is pretty remarkable, but then I care about things like that.)

I know the bad boobies did their job before they went bad on me - we had a farewell party, they were enjoyed and appreciated (not saying by whom or how many ;P), they provided immeasurable comfort to both of my babies and then became specimens in a surgical pathology report. Kind of weird and a little sad, but mostly a relief that the news is good and this part of the cancer journey is done. Yay!

But the rest of the conversation with Dr. O'Neill was focused on everything else ahead of me. I will meet with the oncologist in two days, but Dr. O'Neill had been hopeful that with the small size of my tumors, we might be able to avoid chemotherapy entirely. She spoke with Dr. Obenchain before my visit who said that with my age and family background, she was still strongly in favor of me undergoing chemotherapy. We will obviously talk more about the pros and cons of any treatments ahead of me, but it sounds like I will soon be pouring poison into my body and going bald as expected. And with the aggressiveness of the tumors I had, it will be unlikely that I will be able to have the chemo treatment without having a chemo port put in, so that's one more procedure that I will likely be having in the next week or so.

Interestingly, despite my genetic tests coming back negative for the breast-and-ovarian-cancer gene, the fact that my tumors were 100% positive for estrogen receptors means that the most effective course of long-term treatment to prevent future cancers include permanent menopause, as opposed to the temporary menopause sometimes caused by chemo and hormone therapy. So what this means is that at some point after I've finished my chemo, I will likely be having my ovaries removed as well.

I have known for years that I am done having children, but it's still odd to think that we will be removing yet another healthy body part in order to increase my chances of staying healthy longer. I don't particularly relish the idea of yet another surgery, but I'm okay with not having to worry about ovarian cancer in my future. It's one of the bad ones that is hard to find, hard to treat and rarely discovered with much chance of survival. So, let's get that one checked off the list of future possible cancers and just take those ovaries out now! Whew.

So, essentially in the last two days I have learned that my body is physically healing well and that I will someday have amazing breasts to show for all of the current trauma. (Dr. Jacobsen is very proud of his work and assures me my new boobs will be all the rage. I still think having nipples with feeling in them would be cool, but apparently that's never going to be part of the package again...)

The cancer that was in me was small and is now out and we have very good indicators that it did not spread. But to be sure, we will likely be injecting me with some poisons for good measure, removing my ovaries and putting me into instant menopause with continued hormone treatment for the next five years or so.

Dr. O'Neill was quite honest about how none of this is going to be much fun. With two kids in preschool while I'm going through chemo, she said there will probably be times when I have to be completely quarantined away from them. The aches and pains I'm currently feeling from surgery recovery will continue and eventually fade, but as we expand the temporary implants, I will have new pains and muscle spasms and ice-pick-in-the-lungs moments as my body adjusts to the new reality of being cancer free. And all she said about the menopause was, "It's not going to be a good time." Yeah.

Somehow I always thought 30 was going to be the big year of my life - I learned I was pregnant with Fin 3 days after my 30th birthday. I started, finished and defended my dissertation and became Dr. Parker. I got a job, bought a new house, moved, started the job and had a preemie baby with an extremely traumatic near-death birth experience for both of us. And that was all just between May and December of that year.

Now at 35 I have been diagnosed with cancer, had a bilateral mastectomy, am about to embark on an as yet unknown chemotherapy treatment (exhaustion, nausea, decreased immune system, hair loss, long term toxic exposure to my other body parts), which will be followed by a surgery to implant new "perfect" breasts and another surgery to remove my ovaries and then permanent menopause (dry skin, forgetfulness, loss of libido, hot flashes) and hormone treatment for years.

Assuming all goes well, I will be in remission for five years before they can call me truly cancer-free. By then I will be 40. If this is what my 30s have had in store for me, I'm really hoping my 40s involve more tropical vacations and massages.

But honestly, my 30s have been pretty incredible so far, too. I have found myself surrounded by the most amazing network of friends who love me like family and I am constantly amazed by the love and support and encouragement that surround me with each new challenge I somehow get to face.

A friend asked me today why life gets so hard sometimes and piles so much on us after I told her about spending the day with my grandmother in the hospital. All I could think to reply was, "Because we're strong as fuck and sometimes we have to do a whole lot of hard stuff all at once to be reminded."

But just so the universe knows, I'm reminded enough for now. I need my kids to stay safe and healthy, my mom and family to stay safe and healthy, my friends to stay safe and healthy and connected to me through the next few months of me just feeling like absolute crap. And then I think I should get a break from being reminded of how strong I really am.

My other grandmother, who is a self-proclaimed bible thumping holy roller, once told me she never prays for patience because she's sure God will just test her to show her she already has it. I talked to her for a long time today because I am unsure what I am supposed to be learning from this experience, if I am making the right decisions in my life and where I should be going from here as I move forward trying to raise my kids and make the world a better place for the people I love. She assured me that of course it's all in His hands and I'm handling it all as He wants and expects me to, so I should just trust that I'm doing what I'm supposed to be doing with my life at this moment. (Which at this particular moment means blathering on and on because I'm getting tired and keep having stream-of-consciousness interruptions. As a writer, I apologize for the lack of coherent theme in this journal entry.)

So I suppose that's what I'm trying to do now. Get through this with the knowledge that I am loved and supported even when I feel like crap, that people want and expect me to lean on them from time to time, and that this is just part of the journey I'm supposed to be on. And I continue to pray that I am learning what I need to be learning and doing what I need to be doing along the way.

And as for the physical transformation, when I told my dad about the ovary removal today, he joked that I am becoming the bionic woman as they take more and more out of me. I said I was fine with that as long as people will make the "nuh nuh nuh nuh nuh" sound when I run.

But really, somehow this whole process is about making me LOOK more like what a woman is expected to look like in our society (go big or go home with the new fake boobs, right boys? And yes, ladies, I am totally kidding with that remark.) while actually removing most of the parts that make me female to keep me healthy. Luckily, I still know I'm going to be a hot bald chick. And honestly, as I removed the bandaids from the drains before my shower this morning (I'm down to only 2 steristrips to show for this adventure! And five new scars-in-healing...) I stood there and looked at my current boob-less body and thought, "Wow, I look strong and healthy and kind of hot."

Thinking I look hot is pretty much a rarity for me. Who knew it would come with the removal of my breasts?

Enough rambling for tonight. I'm so excited to get to see and reconnect with many friends tomorrow for a Valley Leadership event. I have gotten permission to remove my oh-so-fashionable compression vest for several hours (no looking like Star Command!) and have found an outfit that is both professional and comfortable. And I will NOT be wearing any prosthetics or padding because honestly, my actual body is way more comfortable right now, even with all the aches and pains.

<3
-B-

Well, That's a Different Kind of Letdown

Before I start blathering about today's cancer nonsense, I owe an apology to my mother and husband for implying that they were my captors in this house arrest. They are here because they love me, care about me, want my house to be clean and don't want me to slip in the shower or fall over anything while I'm on drugs that make me sleepy and dizzy. Because we all know I can do plenty of self-injury simply walking from room to room without anything additional in my system...

The true captors here are, of course, cancer and crazy drugs. But they don't really let me take a break from the house arrest in exchange for sweets, so it was much easier to consider bribing captors who were human in exchange for some freedom. That and I figured my family might like some cookies or ice cream or something. :)

But I worry feelings were hurt in my recent vents and that was not my intention, so please, do not assume I'm being held captive against my will. I mean, I AM, but it's part of the surgery recovery, not any maliciousness on the part of family members who care about me too much.

Okay, now all that being said - let's talk phantom amputee pain! I swear this is bizarre. I know as my nerve endings start to reconnect and wake up, I'll be feeling pain in more places. This is normal post-surgery, of course.

I've had a few surprise places that were numb suddenly start to hurt. For example, the back of my armpits... didn't realize I couldn't feel them until one day it suddenly felt like I had a band-aid in my armpit that was falling off. Strange. Now I have feeling in my armpits again and they're just kind of sore like I've done waaaay too many push-ups.

My mid back and sides are sore like I've over done a good lat pull-down series and my chest... well, it's a combination of too many push-ups and kind of like I've been trying to breathe with a 10lb weight on my lungs. But mostly, I assume all of this is fairly normal post-surgery recovery. My pain level has rarely risen above a 3 on a scale of 1-10 and a half a codeine once a day or so has kept me in fairly reasonable spirits. (Or mostly asleep, depending on who you ask...)

The weirdest part, though is the phantom boob pain. In the past couple of days I have had moments where I would swear my nipples were standing up... but then I don't have nipples any more. When talking with the plastic surgeon the first day, I referred to having "Barbie boobies" - his eyes lit up when he asked if I wanted Barbie's dimensions and I had to explain that of course I didn't want to look like that - I think only a man could even think that was my point - but instead she doesn't and never has had nipples. Barbie boobies are smooth and nipple-free.

I could go off on a nice long feminist rant about what that tells generations of kids about the purpose of breasts, but I'll leave that for another day...

But aside from the phantom nipple reactions, I realized last night there's another pain I've been feeling and it's one I know many of my dear friends will recognize and understand.

When a woman has a newborn baby and her milk comes in the first few times, there is often a bit of a painful pins-and-needles sensation while the newborn learns to latch and get the full milk letdown to happen. But then there is the comfort and release of oxytocin and all is right with the world as the mom and infant bond.

In the past day or two, I have felt like I'm having a milk letdown a couple of times. And instinctively, a woman experienced with breast feeding will cross her arms or press the heels of her hands into her breasts to stop leakage if there is no nursing baby nearby to benefit from the nourishment. Yet when I have this instinctive reaction, I realize I am only pressing the damn compression vest into my scars and there are no nipples to be leaking milk. Because it was the damn milk ducts that grew the cancer that lead to the removal of the breasts anyway.

She swallowed the spider to catch the fly. I don't know why she swallowed the fly, perhaps she'll get new boobs that still have no feeling in the nipples but at least look pretty in exchange for having phantom lactation letdowns with no newborns around.

And the weirdest part? I'm most likely to get the letdown feeling when one of my kids is sad or upset... just like when they were babies and my body knew the best way to comfort them was with my milk and cuddling.

My brain knows what it should feel like to provide comfort to a crying baby. My body hasn't done it in years and never will again - not in that way, of course - but the connection is still there. Which is somewhat cool and somewhat really, really bizarre.

I know amputees occasionally have phantom pains when limbs are lost, but I wonder if there's ever such an obvious mental and emotional connection or if it's more of just a random itch on an elbow that doesn't exist...

Time to tie on my happy shoes and take a walk. Hoping the drainage tubes will be out in a few days and I'll be cleared for a little more distance soon even if I can't get back to running yet...

And my dad is coming to visit today! Just to make sure I'm doing okay. :) I'm sure I can find some project around the house to help him feel like he's taking care of me, too.

Feeling very blessed and loved, even if I'm not leaking milk these days...
<3
-B-

Twitch, Twitch, Twitch...

My eye twitch is back. It's been almost a month (!!!) since I was diagnosed with breast cancer and today is the first day my stress-induced eye twitch has been acting up.

I feel like I am under house arrest. Granted, it's a clean, pampered, how-can-we-take-care-of-you-are-you-sure-you-don't-need-anything? kind of house arrest, but I'm still feeling a bit trapped. And admitting that makes me feel like the world's biggest ingrate.

I know I need to rest. I know I need to take things really easy and I know I'm not the best person at recognizing my limitations until I've exceeded them. I am surrounded by people who love me and want to take care of me and I know I am very, very blessed to have this kind of support. My house has never been this clean, my meals have never been this prompt and tasty. The people who love me are taking better care of me than I can take care of myself.

And yet I have to ask permission to shower. Because I'm not allowed to do it alone. I can't leave the house or take a walk without a buddy. Because I'm on too many medications.

Any time I mention plans I have in the upcoming weeks, I have to assure everyone that SOMEONE will be there to babysit me to make sure I'm okay. Because apparently when you get cancer at 35 you suddenly become 10 years old again with a burning need to get into mischief.

I know all of the overprotectiveness is because people care about me so much. I do not mean to complain because I know how very, very lucky I am to be so loved.

But it would also be nice to be able to find things in my own home. It's been cleaned and scrubbed so much in the last week - for which I am INCREDIBLY thankful - but things don't end up where I'm used to them being. I actually haven't seen my glasses since the day I was diagnosed with cancer, so I've been wearing my old pair with the out-of-date prescription for a month because no one knows where my regular ones got stashed in the Benah-has-cancer cleaning frenzy.

When we first discussed healing time with the surgeons, I was told to expect to take at least a week off work, then kind of ease back into stuff. I asked my plastic surgeon on Monday when I might be able to drive again and he said it would be at least another week to ten days - or not until I'm off the Valium completely.

But because of the expansion process of the reconstruction, I will likely be on the Valium for at least three more weeks. Or longer. And while I'm on the medicines, I can't shower alone, can't go for a walk alone, can't drive....

Twitch, twitch, twitch.

I really don't mean to complain, but this feeling of house arrest, of being grounded, of having to ask for permission to do just about anything was NOT part of what I expected from cancer. I expected surgery, pain, feeling sick and tired. The twitchy cabin fever is just another unexpected side effect.

Ergh.

The World's Best Shoes

Ahhhh - that feels better...

As most of you know, I don't care about fashion labels, what's in style in any given season or who is wearing what (who?) when. But being a bit of a pop culture junkie and a woman in my 30s, I'm very, very familiar with the scene from Sex in the City when Carrie Bradshaw coos to a pair of shoes in a store window, "Hellloooo, lover." If I really cared about these things I could tell you more about the shoes themselves, but that's my point - I can't and don't really care to know more about them.

I swear I have never felt that way about a pair of shoes. But after getting the clearance from my doctor yesterday to start doing some activity again, my body woke up at my usual 4am run time (I haven't needed an alarm for this in weeks) and I grinned to know I was going to get to be up and be active again.

Obviously, I have not been cleared to run. The impact would be way too much on my mega-bruised and healing body. But just tying on my sweet little Nikes gave me such a rush. All I could think to myself was, "Oh, THIS is what she meant when she cooed to the shoes."

I haven't been a runner very long - actually only started in June - and I even hesitate to call myself a runner in front of most people because I know I'm such a novice still. But the mental peace, the relaxation, the anticipation of knowing I was going to get to be out before sunrise enjoying the desert and the heat, getting my blood moving was just incredible.

I know not every day with cancer is going to be a good one. Hell, most people would think even the expectation of ANY good days with cancer is crazy, but today - even though it's only 5:30am - has reminded me of many things:

My body has not failed me. My body is strong and healthy and we have a blip that we're fixing and getting rid of - it will just take some time to heal.

I am not weak for getting frustrated at how long it's taking me to heal. After all, four days ago I had breasts. Today I have bruises, scars and swelling. Heck, after Fin was born I was barely getting out of bed four days later, much less tying on my running shoes and heading out into the neighborhood.

I have way more people than I ever expected offering to help me shower and brush my hair when I have trouble with it. Or even when I don't have trouble with it. ;) (And no, I'm not sharing names of those who have offered help with showers...)

And before any of you tell me to take it easy and not push too hard, I swear I went for a nice leisurely walk with my nurse friend and she ONLY let me do a mile this morning. I really want to get back to being active, but I know the best way to make it happen is to not do too much too soon and set myself back any. The cancer has set me back enough; I'm not helping it more.

The other good news is all the anti-inflammatory and pain meds have made that knee injury I'd been nursing for a few weeks totally a thing of the past. Bonus, huh?

So today my smile is back. I'm okay if it comes and goes throughout this process, but seeing those shoes sitting next to my bed instead of being put away in the closet definitely, definitely helps.

:) <3
-B-

Some Days Are Just Hard

So - three days post-op and today got hard. It wasn't a bad day, really - got great news from the doctor, but it was just somehow harder than it's been up until now.

Of course, I'm writing this as I'm physically and emotionally exhausted, but I figure that's all part of this roller coaster, huh?

My kids went back to school today. First day back for both of them and I had absolutely zero role in that. I couldn't even tell you what they wore, what was packed for their lunches or if anyone even took pictures. I just missed it entirely. Because of stupid cancer. I didn't get to drop them off or pick them up and by the time I saw them tonight at dinner and asked how school was and what they did, they just said they played. Which, granted, is what they say most days, but I felt like I was missing out.

Today was also my first post-op visit with Dr. Jacobsen, my plastic surgeon. He has a fancy schmancy office in the Biltmore area and his office is always so packed there are never enough seats. My appointment was at 11am and I usually take my pain meds and valium around 10, so I only took a half dose so I'd be awake enough to actually have a conversation with the man. I was fighting that half a valium the whole time I was in the waiting room.

We didn't get called back in to a room until after noon. The visit went well, he said everything looked exactly as it should, I'm healing even faster than average and already have my full range of motion back. He gave me an A+ for being 3 days out of surgery, so I was pretty glad about that. We go back in a week to have the drains removed.

After that we ventured out to lunch, which was nice. We spent a good part of the meal guessing women's bust sizes and I actually even went up to one of the employees before we left to ask her about her breasts. I figured it really was kind of a once in a lifetime conversation, so why the heck not? I explained that I was a few days post-mastectomy and contemplating my reconstruction surgery.

She was slender but not skinny and had a nice figure, so I was curious if she would tell me what size she was and if she was happy with her size, able to be active, etc. She very readily said she was a 34B thought they were great. She said she could still go braless when she wanted, but she could also dress them up and make them more noticeable, too.

Who knew having breast cancer was a license to just go talk to pretty women about their boobs? LOL

By the time we eventually made it home, we'd been out about 5 hours and I was quite sore from all the prodding and probing and moving about. I took a half a codeine, passed out and proceeded to have drug-induced nightmares for a while.

Really not fun.

So, I'm physically more sore than I've been in days, drained and having nightmares. I figured a shower might be a good idea.

...except for the fact that even the pressure of the water on my bruised chest was painful. I could wash my hair by myself, but rinsing it was a challenge. Dave was there to help hold the drains, but even just the logistics of trying to figure out how I could turn around or reach the soap or rinse off was frustrating. And painful. And stupid.

I know I'm not the best person at asking for help. And I know I'm not always that good at accepting the help even when it's offered. I am working on these things and cancer is MAKING me work on these things. But when it hurts to brush my hair, I don't want to ask for help, I just get pissed off. Because why the hell can't I raise my arms long enough to brush my hair????

And when I'm brushing my hair and say out loud, "Crap this hurts," why isn't that enough for anyone to realize I could actually use some help even if I'm not smart enough to ask for it on my own?

I really have not been putting on any sort of facade about my reaction to cancer. I have laughed way, way more than anything else in the last few weeks. I have felt great since Friday - sore and tired, of course, but mentally and emotionally I've been really good. But today was hard and I felt like I'm not allowed to admit that because it's too much for everyone else for me to be having a hard day.

I have been apologizing to everyone for weeks for getting cancer. I know it doesn't fit into anyone's plans for the next few months. But today I was actually told that even though my cancer is really inconvenient for everyone, no one blames me for it.

I guess that's supposed to make me feel better?

My body and mind need rest now. I will be more chipper about this again tomorrow.
-B-