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-

Making Plans for Poisons!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hells yeah.

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

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

<3
-B-