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.

********

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-

Happy Birthday, Dave!

Today is my husband Dave’s 33rd birthday. While this cancer crap has been hard on everyone who loves me, he is in the unenviable position of being the only person, other than myself, of course, who has to live with this 24 hours a day. The kids are too young to be very aware of what’s actually happening, and as much as I know it’s on my parents’ minds pretty much constantly, my mom can go home and focus on other things from time to time and my dad is 1500 miles away.

Obviously, I am the only one who has to deal with the physical pain of healing from surgery, experiencing the poison of chemotherapy and actually having had the cancer inside me, but as my husband, Dave has had to deal with the reality of knowing his wife and best friend is sick and hurting and there’s really not a whole lot he can do about it.

We have been together for almost eleven years and every marriage has its ups and downs. Unfortunately, we were in a bit of a rough patch for a few months recently and then – dun dun dun (the music again) CANCER. There have been times in the last 5.5 weeks since my diagnosis when I just really wasn’t sure how we were going to make it through this cancer journey together.

Today Dave stepped up and came through for me in the most amazing way and I was reminded of why we’ve been together for as long as we have. We may still have challenges ahead of us in our relationship, but I think today was as much a birthday gift for himself as it was a huge gift to me.

We had another appointment with my plastic surgeon today – Dr. Jacobsen of the fancy schmancy Biltmore office. Over the past week, I’d been getting increasingly anxious over the fluid build up in my healing chest and especially over the pain and numbness of my left arm yesterday. I wasn’t sure if I was healing well enough to start the process of filling the implant expanders and I was just generally apprehensive about the whole appointment.

Our appointment was set for noon. We finally got called back into a room at 1:30 and we didn’t see the doctor until after 2pm. This was our fourth visit to his office and we’ve never waited less than an hour to get in with the doctor. In fact, despite the office having two waiting areas, there are usually so many people there that some have to stand for a while.

Dr. Jacobsen finally entered the room and asked how we were doing. I told him that I definitely had some fluid build up that had me concerned and tried to describe what I’d experienced with my arm yesterday. He was moving about the room, pulling over a tray of instruments, adjusting the booby spotlight and generally not seeming to pay much attention to anything I was saying. He had me open the drape top to examine me, pushed a little on the fluid build up and said it was really very little and nothing to worry about.

As I was still trying to describe the arm concerns, he rubbed an alcohol pad across the top of my chest and I winced. He told me I couldn’t feel anything and I let him know that the top of my chest is still quite tender and bruised-feeling and it did actually hurt for him to press on it like that. In order to do the fluid injection for the implant expansion, a small tool has to be pressed to the skin to find the opening in the implant. He was continuing to rub the alcohol and press the tool into me while I was trying to ask a question, so I stopped and asked what he was doing.

He joked that it was a Geiger counter and he was checking me for radiation and in the next half second I realized he was coming at me with a three inch needle.

I yelled at him to stop and he assured me that it wasn’t going to hurt (though I was obviously feeling more than he seemed to think I could). I told him that I wasn’t concerned about pain, but he couldn’t just be coming with me at a needle without telling me what we were doing. Of course, he’d explained the process last week when the drains were removed and I knew exactly what was supposed to happen today, but what kind of doctor walks into a room and starts a procedure without ever asking a patient if they have any questions or concerns about the procedure??? This whole interaction had taken place in less than three minutes after we’d been waiting for over 2 hours.

I told him that I felt like he was talking down to me and he was just worried about whether or not my boobs were going to be pretty (and he reminded me that he’s very good at what he does so of course they will be) while I had actual concerns about healing and getting well and didn’t really give a damn in that moment what my boobs were going to LOOK like. I was still concerned about not having feeling in my arm for a day and the fact that I couldn’t even make myself lunch and had to call my mom and sister to come make me a sandwich.

He said he never used the word pretty (which he hasn’t; he says I’m healing beautifully and that my new breasts will be absolutely beautiful) and then asked if they made me a good sandwich.

He said he wasn’t talking down to me and again told me that I wouldn’t feel any pain in the procedure. At this point I was pretty pissed off, so I just leaned back for him to redo the alcohol and expansion-finding tool part. I have never had a fear of needles and have always kind of enjoyed watching blood draws and things once the needle is actually in. As long as I don’t watch the insertion, I can generally watch the rest, so once I felt the needle prick, I looked to see how the rest of the process went.

As he was slowly pushing saline into the first implant, he said he’d be able to drain the fluid on the other side from the same insertion that he’d be filling the implant with. Now, the implant opening is at the top of the chest and of course, all the fluid build up was pooled in the bottom of the area (thanks, gravity). When I asked if he’d really be able to get all of that fluid out without fishing around in me with a needle, he assured me that he didn’t fish. He said if I wanted a doctor that bad, I’d have to go find one down on Van Buren. But then he admitted he might have to make another needle insertion to drain the fluid that I had.

While he was filling the implants, he turned to Dave and said over his shoulder, “See? This doesn’t hurt her. She can’t feel it, there was nothing to be afraid of.”

Of course, it wasn’t any more painful than a blood draw, but I could definitely feel several ounces of fluid entering a foreign body in my chest and I realized that my entire lower body had tensed up when I was angry. I tried to concentrate on deep breathing and relaxing and by the time the first side was done, I was mostly relaxed again and even tried to make a joke about how tensed up my muscles had been.

He began the expansion on the second side, which was a bit more painful, so I mostly just watched Dave’s face watching the procedure to see how things were going. He was watching intently, but didn’t seem concerned so I continued to just try to stay calm and breathe deeply rather than think about how weird this whole thing really is. I now have little plastic bags of fluid under my skin and muscle to (eventually) look like I have boobies again. Bizarre.

Dr. Jacobsen explained to Dave (not to me) that in order to drain the fluid from the cavity, he would simply slide the needle out of the implant but keep it under the skin to draw the fluid out. This also happened to include pushing on my sore chest trying to force the fluid up to the needle with prodding and pressure. Fun.

He did eventually have to move the needle, and while the fluid extraction itself was not painful at all, there was a moment of very sharp pain that actually made me jump and cry out and my eyes immediately filled with tears from the stab of pain. I thought he’d just nicked me somehow when he’d taken the needle out, so I said, “Wow, that hurt!”

He replied, “What hurt? I haven’t moved anything. We’re almost done here.” and I realized the needle was still inside me.

He finished draining the fluid and showed me that he’d extracted almost as much as he’d injected and that it was the exact color he expected it to be to know things were healing correctly. By this point, tears of anger were streaming down my face so he handed me a tissue and went about putting away the tools and getting rid of the drained fluid.

I said I had a few questions and asked Dave to hand me my book where I’d written them. Dr. Jacobsen asked what I wanted to know, but I was so angry I could barely speak. I managed to say through clenched teeth that I was working on it and simply looked at Dave.

The doctor finally came back around to the side of my chair and asked again if I had a question for him. I was so mad that I could not even look up at him. I knew if I opened my mouth, all that was going to come out was, “Why are you such an ass?”

Luckily, Dave jumped in and explained that I am an information seeker and that if he would simply talk to me about what we were doing and answer my questions, I’d be a lot more relaxed with everything. Dr. Jacobsen asked what information he needed to give me and said he'd answered all the questions in my book - as if it was silly of me to have a book of concerns about healing when I have to manage at least three doctors for several months.

Dave asked what had happened that made me jump and cry out and Dr. Jacobsen said I was so tense that even a fly landing on me at that moment would have made me feel pain. He said he hadn't done anything that would have made me hurt. Afterwards, Dave said he'd been watching and after I jumped, Dr. Jacobsen did reposition the needle before continuing the fluid extraction as it seemed he'd created a vacuum while trying to push the fluid toward the needle above it.

Dr. Jacobsen continued to say that he could tell I was always looking for the worst case scenario and I needed to look for some positivity in my healing because I am a “healthy little girl” who just needs to try to be strong for a while and trust that he knows what he’s doing and everything is going to be fine.

This man has never taken three minutes to get to know me at all or he would know that I've approached this whole cancer experience with more positivity and strength than most people can believe...

Dave verified that the fluid build up I’d experienced was normal and asked what amount would be cause for concern or follow-up before our next appointment in two weeks. Dr. Jacobsen said that any of it would be fine and there would be no emergencies.

Wow, I am so lucky that my plastic surgeon is God!

This entire time, I was just staring at Dave, unable to speak to this ass of a doctor who seemed to think I was just a little girl who shouldn’t worry my pretty little head over such things as recovering from major surgery. And my sweet husband knew how angry I was and how anxious I was and exactly the things I needed to try to get out of the doctor to be able to relax.

When I could finally speak, I asked again about the numbness and pain in my arm. He said he had no idea what it was, but it wasn’t from anything he had done to me. It was probably something from the lymph node biopsy healing, but nothing he was concerned about and I shouldn’t worry about it either. (Yeah, right, I was absolutely ridiculous to worry about the fact that I couldn’t use my arm for an entire day. What was I thinking?)

Dave asked if he could give us any idea of how many injections I might need to get to my final breast size and Dr. Jacobsen said that of course every woman was different and I’d eventually decide what size I wanted to be because there’s no such thing as a B or C cup. How is this an answer to a question? Dave calmly asked again, “Based on Benah’s size and the fact that she’s not going to want huge breasts, how many visits do you think we will need to plan on in the next few months?”

I was so proud of him for being able to cut through the doctor’s crap and just get us an answer of how many more times I will have to endure the experience I went through today.

The doctor said he’d probably expect to give me 8-10 total injections before I was happy with the size and I might decide to stop earlier. And whenever I was happy with them, he’d want to do probably two more injections to allow for enough stretching of the skin so the implants would have a more natural motion and shape to them. He also said that while he knew I wasn’t interested in giant breasts, he probably wouldn’t be able to give me large breasts anyway because I was small and didn’t have the tissue to support them. (Sorry to those of you out there who told me to go big or go home. Sounds like I was always intended to make my money with my brain rather than my hooters...)

By this time I was able to ask a few more questions about what to expect regarding pain or muscle spasms after each expansion and he told me that I would probably be in some pain until at least December, but each week should get better than the last. And he said fluid build up was nothing to worry about, but if I didn’t like it, I should just keep wearing my compression vest as the more I wear it, the less fluid should collect in the chest cavity.

Ergh – I was so looking forward to getting out of this thing because it’s so uncomfortable, but honestly, the fluid build up was weirder. So it appears I’ll be in my pink scuba vest for a couple more weeks, at least part time. Fun.

The doctor left the room and I was still just amazed and angry about the whole interaction. Dave helped me up from the chair and helped me get dressed and knew I was still just seething at this man who treated me like I was ridiculous for having concerns about my health. Apparently they’re just boobs to him.

I know he does this procedure all day every day and honestly, the actual draining and filling of the implants was pretty uneventful (other than the one sharp stab of pain that he blamed on me...), but while it may be part of HIS routine, it’s certainly new to me.

We scheduled our next appointment for two weeks out because next week is Labor Day, but it seems this will be an almost weekly appointment for the next several months. There may be draining necessary for the next appointment or two, but that should taper off a little after I start chemo, so from there we’ll just see how I’m feeling from week to week and how I’m liking the implants as they grow.

Dave asked if I wanted to find a new doctor to finish my reconstruction. The idea certainly has its appeal, but I’m concerned about whether another surgeon would be inclined to finish what Dr. Jacobsen has started, how it would impact insurance coverage, etc. So for now, I’m trying to just tell myself that Dr. Jacobsen was recommended to me by a surgeon that I DO like very much and I DO trust. Dr. O’Neill, my breast surgeon, said that for implants, he was the best guy around. And based on his waiting room and how long it takes to get in to see him, he definitely seems to have a great reputation for doing great work.

And of course, he’s told me himself how good he is at his job...

So I’m trying to think of him as just the guy who gives me boobs, not as an actual part of my healing team. I do not intend to ask him any more questions than I absolutely need to and I will turn to Dr. O’Neill or Dr. Obenchain for most of my actual concerns about healing, despite the fact that Dr. O’Neill has told me to turn to Dr. Jacobsen for that information. He has proven that he cannot answer my questions in a satisfactory manner and I do not want to interact with him more than I need to. I trust that he is good at the surgical aspects of his job and am coming to terms with his rather limited ability to answer questions with anything more than a “Don’t worry about it,” or “Just trust me,” or “It’s fine.” Though honestly, when Dave was asking questions, he would answer them. When I asked, I was being silly and worrying too much.

Dave commented afterwards that he's either autistic-like in his social abilities or just really sexist. I'm leaning toward the latter.

I’d like to believe that all of my concerns really are nothing, but then again, my radiologists kept telling me I didn’t need to worry about that lump I’d been feeling for 18 months and we all know how that turned out. And for that matter, when I was pregnant with Fin, my midwife kept telling me I wasn’t really having contractions and there was nothing to worry about... until my water broke 5.5 weeks early and I suddenly had a baby an hour and a half later. I think I’ve done a pretty good job of listening to my body up until now and I have learned to really appreciate having doctors around me who respect the fact that I am the one living in my body and experiencing it and I might actually know what it feels like in here just a tiny bit better than they do.

So – the first draining and filling is done. I have decided that my plastic surgeon is an ass and I do not particularly like him, but he appears to be really good at the skill part of his job (based on the recommendation of a doctor who has both surgical skill AND the ability to communicate with her patients) and ultimately, I want the person who is going to give me the best medical and physical outcome when this is all said and done. I’ve suffered arrogant doctors before (though usually not for long, but we’ve already started down this road with him and I feel like it would be harder to make a switch than to just lower my expectations for his bedside manner) and I think I can make it through the next few months. With any luck, I will have completed my expansion and the final implants before the end of the year, so maybe I won’t even have to see him past the next 6 months or so.

Dave and I went out for a birthday lunch after the appointment – we were both starving by the time we got out of our “noon” appointment at 3pm – and it was so nice to feel like he had known exactly what I needed to get through that experience, how to read my needs when I was so angry and hurt that I could not speak, and how to get the information out of the doctor that I needed to hear to be able to be comfortable with what was going on. It’s been way too long since I felt like we had connected in that way and I felt like Dave really knew what was going on with me, but he came through for me today in a tough situation and I am so thankful that he was there with me. I didn’t need him to physically hold my hand because I wasn’t scared, but having him there to give me the space to be angry, and him being angry along with me, was the best support I ever could have asked for.

Happy Birthday, Dave. Thanks for spending part of your day making mine so much better. I love you.

<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-

I Am SO Loved.

I know I already updated with the outcomes of the medical adventures with the oncologist today, but I have to make a separate entry to mention the most amazing and wonderful and unexpected part of my day.

I cried and cried and sobbed and laughed and sobbed some more today because of the love of so many of you. I have been a part of an online mommy chat group over the past 5 years. I have had the luck to meet a handful of these women in that time, but most of us have been only cyber-friends - sharing advice, lending an ear, talking about raising the kids, feeding issues, pooping issues, marriage issues, and laughing and being silly and making amazing friendships.

I knew several of them were conspiring to send me something for my healing room and I had been told it would arrive today. When a poster tube showed up, I figured they had gotten together to create a poster of support.

I unrolled a heavy stack of photos and paper and realized they sent more than one - as I slowly unrolled the first poster, I saw that from across the country, they had all taken the words from "Lean on Me" and contributed photos of themselves with the words to the song in different silly ways.

Sometime in our lives, we all have pain, we all have sorrow... and each couple of words was a photo of a different friend with a sign or a painting or a drawing or a chalkboard or a magnadoodle or with lipstick on a mirror or writing on a cheek or hand... and a huge grin or kiss or silly face to make me feel better. I was sobbing before I read the first line of the song.

I was overwhelmed by the thoughtfulness and planning this poster required... then I realized there was another one underneath, and another, and another, and another. All told, about 60 women - most of whom I've never actually met in real life - they are my "imaginary mommy friends" - worked together to create 5 incredible posters that had me both laughing and crying so hard that if I still had boobs, they would have fallen off.

I am a Gleek, so there's a poster of everyone doing the Glee "L" on their foreheads with a giant Don't Stop Believing in the middle - and pictures of the Glee cast are interspersed in with my dear, hilarious friends.

There is a ridonkulous poster (a word they all know I hate and they use especially to make me laugh) with each of them doing duckface - I cannot stop laughing at these photos and am awed at the love that went into making them. (If you don't know what duckface is, check out antiduckface.com Really.) Because I'm also a Twilight fan (I draw the line at calling myself a Twi-hard, sorry.) they also included duckface pictures of Bella, Edward and Jacob. Again - laughing and crying at the genius here.

There is a poster of this amazing bunch of women looking in every direction Brady Bunch-style and sending me love and "healing dust" - and they even included a picture of me from my Bye Bye Bad Boobies party!

And then, for reasons I refuse to divulge or explain - the final poster is all of their kids carrying watermelons and fruit. They carried a watermelon for me. I have seen so many of these babies grow from black and white ultrasound photos into preschoolers and 1st graders. I have been able to share in their sleep patterns, eating habits, health scares and the silly, funny stories that make parenting so worthwhile.

There will never be words to describe how amazing this gift is from these women who love me so much despite the fact that most of them have never actually met me in person. I will never be able to thank my dear friend Stephanie who organized and put these projects together (while she was traveling for 2 weeks, too!) enough. I will be forever indebted to all those who created these ideas, who know me well enough to make me laugh until I cry and sometimes until I pee, and who took the time to take goofy pictures of themselves to show me how much love and support I have in this stupid, stupid battle.

I've always considered myself a fairly strong woman, but with friends like these (and this is just one group of friends! Don't forget the amazing VL friends that have been here in person throwing farewell parties for the bad girls, cooking meals, decorating my healing room, visiting me while I heal and giving me so, SO many hugs last night at the VL32 event!) I know I really can handle anything that comes my way.

Thank you all for bringing so much love into my world.

<3
-B-