Wiggity, Wiggity Wack. Yeah.

I'm not so good at doing nothing. I promise, it's a lot harder than it sounds, especially when you have two little people you want to spend time with. And when you're reading them books and happen to catch yourself picking up laundry, dishes and toys in between stories....

I'm working on it, really.

But I did get to have a big outing on Friday. To the hospital!

Dr. Thai's office was able to get an ultrasound scheduled for me to find out if we needed to drain more fluid from the left side. On the one hand, the idea of having more fluid taken out of me was kind of yuck, but on the other hand, if it helped relieve some of the pressure in my chest and helps me heal faster, I was up for it.

I had to check in at noon for a 1:30 appointment because they had to draw more blood for some lab work. The radiologist that Dr. Thai specifically requested was running a bit behind, so we got to hang out even longer, which is always fun.

Ultimately, though, he was unable to find anything that needed to be drained. This is good news because it means I might be healing internally a bit better than we thought (a lot of fluid in there would have been a sign of not healing right), but it's a little bit bad news because it means we still don't know why my chest got swollen and hard overnight and there's no way to relieve the pressure.

So, I'm pretty much right back where we were before the ultrasound right now. From what I can see, the hole in my chest seems to be closing up, but I also appear to be healing around the sutures that have been in me for a month. Eeeewwwwww.

We'll know more next Friday when I get to visit Dr. Thai again, and in the meantime, I'm still laying low. Will probably work from home most of the week and only go in for meetings a couple of days.

So anyone who wants to bring me lunch and/or bring your laptop and work from my place for a while this week, we have free wi-fi! :) I'll be here on my own with the kids in school and Dave working this week.

And yesterday, my amazing friends Laura, Jess and Rita took me wig shopping! I posted some pictures in the photo album.

I think I'm probably going to get two wigs for the next few months, just to have a little variety. Right now the front runners are the shortest style, probably because it looks a lot like my hair did in the last couple of years while I was growing it out, and the shorter blonde one, though we would get that in a darker color, obviously.

There's one more wig shop I want to check out before I buy anything, but by the end of this week, I might have picked out my hair style for the next 6-8 months or so.

Very bizarre.

Now how's that for an exciting Sunday evening wrap-up? Yeah, I just wanted to share the pictures. ;)

<3
-B-

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-

Attack of Pre-Chemo Brain

Twenty-four hours to chemo. Twenty-four hours to chemo. Twenty-four hours to chemo... and cancer is already making me stupid.

I've been warned about "chemo brain" - this is an actual, recognized side effect of chemotherapy treatment - an inability to think, reason or understand (which is essentially what I do for a living... Greeeeaaaaat.) with an added bonus of short term memory problems. So if I'm suddenly an idiot the next time you see me, please understand I really WAS smart and competent once. But now I'm fighting cancer so I get to lose that in addition to my boobs and my hair.

And apparently, I also get to lose sleep. I was exhausted after a long day yesterday and could barely keep my eyes open long enough to make and eat dinner with the family. I announced I was going to bed at 8pm and swore that if I was still awake at 9pm I was taking a drug to knock me out.

Well, around 8:45 the bedtime screaming started. So I went to help get the kids down and give Dave a break. And when Greta was finally asleep and Fin started demanding Daddy instead of Mommy, I was happy to tag out again and get to bed. It was 9:45...

I zonked out no problem and slept just fine. Until 1:45am. Then I was awake until after 5.

Yeah.

I climbed back into bed around 5am and made myself stay there until 7:30, but there was still very little sleep. And the sleep I did get was full of bizarre and very vivid dreams. God built me a loft with a huge ladder, but the ladder broke when I was halfway down and then I had to climb through an obstacle course of home repair debris (apparently in my world, even God doesn't clean up after Himself... sheesh. Do I have to do everything?)

And I dreamed about getting texts from friends with advice on how to get to sleep. The only one I remember was "Snacks!" - which I had already tried around 2am...

So - no real point to this entry today. The mind is going in a million different directions today with no clear purpose. Even when I have a purpose in mind, I can't seem to keep myself on track.

I picked up one of my cancer books this morning to see if there was any info on a concern I'm having with my expanders and ended up trying to read the chapter on the specific chemo drugs. I didn't have the attention span to read a whole paragraph and found myself just flipping through the chapter at random reading pieces here and there and trying to remember exactly which combination of drugs I'll be getting tomorrow (Taxotere and Cytoxin, I believe).

The book listed various side effects and possible ways to address those side effects (Cytoxin can apparently impact the bladder, so I'm supposed to drink an extra 3 glasses of water?) that I hadn't heard before, but I couldn't even formulate the questions to write down to ask tomorrow before we get started. So I ended up just putting bookmarks at each page and hoping my brain is in better shape tomorrow.

Though, honestly, I am already expecting tonight to be much like the night before the first day of school - completely sleepless. So, I suppose I will really welcome the dose of Benadryl that comes with my chemo cocktail in the morning because all I have to do is smell that stuff and I'm asleep.

My brain is mush and I haven't even started chemo yet. Ergh.

Thank you all for bearing with me over the next few months when I'm suddenly forgetful and dumb.

<3
-B-

I Am So Very Thankful

The lull is back a bit - I'm still working on finding a new plastic surgeon, but with the plentiful and quick recommendations I received - all for "the best" surgeons, of course - I am confident that I will find a good fit to replace Dr. J and will soon feel like I actually have someone who is a part of my healing team, a partner in my care.

I have appointments with new plastic surgeons throughout the day on Wednesday and then I start chemotherapy on Thursday morning. So the long Labor Day weekend is now forcing a bit of a lull on me, and this time I am happy to just sit back and enjoy it.

I got to spend yesterday with my sweet baby boy. I can't believe he will be five years old in just a few months. His little brain is so amazing and creative. He's incredible with Legos. He got rewarded with a new set of Star Wars Legos yesterday and as he was putting them together, he announced, "I don't even have to use the instructions. I can use my brain as the instructions!" And he did. The starfighter looks awesome.

Greta wanted to go to the children's museum with Dave, but Fin wanted to stay home and play with me, so we got a much needed and overdue mommy/Finny day. It was perfect.

We played Lego Star Wars for a good part of the day, he curled up in my lap and asked for scary monster stories and we turned the bed into his house when he wanted to play kitty cat. He told me I was his owner, built himself a bed and house out of pillows and a laundry basket, made a tail out of a long necklace, hung a sign on the "house" with his name on it and drank milk from a bowl on the floor. He did this for over an hour.

And while I was having the great mommy day, I also got to use some pent up energy to have an impact on the house. I cleaned up the cancer room and our bedroom, reorganized my half of the closet and the linens in the armoire, and I washed and put away 9 loads of laundry. It was a very productive and fun day.

Turns out I’m sometimes really good with the lulls in my life after all.

I woke up a good three hours before anyone else in the house this morning. And I actually got a good night’s sleep, too; they all just slept in.

During those three hours to myself, I got to do some reading, think about my cancer and listen to some great music. And I realized that as I’m heading into this somewhat daunting week, the emotion I am most feeling right now is thankful.

I am incredibly thankful for my amazing children, for a husband who is working hard to support me through the roller coaster of this stupid illness, and for having my mom and sister close by and knowing they will be by my side in an instant should I ever need either of them for anything at any time of day. I’m also thankful for my dad who, although he is 1500 miles away, can always help me put my stress into perspective with a quick phone call and who reminds me that so much of this stuff is crap and not worth wasting my energy worrying about it.

I am thankful that my niece is healthy despite her premature entry to the world – and I’m thankful that she came early so she was already stable and home by the time I got my diagnosis. I am thankful I was able to support my sister and her family through the rough first weeks of Jillian’s life and that things have settled down for them a bit and I know I can count on their support now. I am thankful that my kids get to grow up close to their cousins. Watching the 2 yr olds play and have conversations with each other is incredibly entertaining.

I am thankful for a great job with really good health insurance. I am thankful for coworkers and supervisors who are supportive and helpful through this illness and who make sure I have the flexibility to work from home when needed and who have let me know my work and projects are covered any time I need to be out for doctor’s appointments, treatments or healing.

And I am hugely thankful for my friends. I have been blessed with an incredible support network and this last six weeks has really shown me how many amazing people I have in my life. I am thankful for my TMS cyber-mommy friends who have made sure I am always surrounded by their love and support. I am thankful for my tireless VL friends – I know a single day hasn’t passed in the last 6.5 weeks when at least one of you hasn’t contacted me, checked in, visited, called, or texted just to say you’re thinking of me and to ask if there’s anything you can do to help me more. You are truly wonderful people.

I am thankful for the high school, college and grad school friends who have gotten in touch after years of little contact just to let me know I’m in their thoughts or prayers, and I am thankful that so many people have added my name to their shirts in various Race 4 the Cure events, Relay for Life events or other fundraisers for cancer awareness and research. I am always honored to know you are thinking of me and wishing me well on this journey.

And as odd as it may sound, I am thankful that this disease has given me an excuse to spend time catching up with a few people who have always made my life more stable with just a phone call – Ray, Rachael, Steph, Allie, Chris – thank you to each of you for the hours on the phone just being normal, being my friend, not judging me, not lecturing me, always loving me no matter what, and for making me laugh until I hurt. You may all live very far away from me, but know you are never far from my thoughts and are always in my heart.

I am thankful for the strong and positive women I have met who have been down this road before me. I am sorry we have all had to experience this journey, but I know my travels down this road have been made easier with your support, advice, recommendations for care providers, and just seeing how normal life can and will be afterwards. I very much appreciate all the trinkets and totems you have shared from your own breast cancer experience and I really hope I never have a need to pass them on to anyone else I love. Laura, Robin, Deborah, Tammy – you have all shared so much with me and I appreciate your strength and openness.

I am thankful to have two very thoughtful and open female doctors on my cancer team. Dr. Jennifer O'Neill and Dr. Robin Obenchain have both been amazingly warm, comforting, informative and approachable throughout this whole experience so far. They both start and end every visit with hugs for everyone in the room. I don't consider myself all that huggy of a person most of the time, but the obvious compassion and concern that these two doctors have for their patients is very appreciated. Everyone warned me that cancer doctors tend to be cold and distant, to forget that there is a person around the cancer rather than just seeing the cancer itself - my breast surgeon and oncologist are two of the warmest, friendliest and most competent doctors I've ever had the pleasure of meeting. I am thankful to have them as partners on my healing team.

I am thankful for good music – this journal entry is brought to you by Mothersbaugh’s Canon by Mark Mothersbaugh (my close-your-eyes-and-just-breathe song since grad school), Glitter in the Air by P!nk, and pretty much anything by Jack Johnson. I am thankful for dancing and laughing until I hurt.

I am thankful for having learned how much I love running before I got sidelined by cancer. I am really looking forward to getting back to it and I hope to run through many more sunrises soon.

I am thankful for sunflowers, butterflies, hedgehogs, watermelons, dancing women, duckface and remote controls – all of which make my cancer-be-gone sanctuary a calm, healing space. I am thankful to have the space to curl up and rest when I need to, even if I don’t use it as much as some of you think I should.

And finally, I am thankful for all of the comments you all have left me here and on facebook. I know so much of what I write is just blathering, navel gazing, getting junk out of my head – but it means a lot to know there are people who care about me enough to read it and let me know you are here to support me.

I hope you all know how much you mean to me. I am thankful that I have today to try to let you know what an impact you have made in my life. I hope we all have many more healthy days to share with each other.

<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.

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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-