Monday, June 9, 2014

I've Been Slacking

I can't believe how long it has been since I've sat down and written anything. It certainly isn't because nothing has been happening. I mean if nothing else I have to celebrate the fact that I actually am finding hair in my sink again when I clean the bathroom. Well, maybe celebrate isn't quite the right word, but it certainly is a sign that things are getting back to normal. I'm sure you will all be surprised that there are a number of doctor's visits to update. Even another procedure where I got tattooed areolae has yet to be chronicled let alone two wonderful trips to Florida. I guess I just needed a little break from writing, but now the muse seems to have returned and I'll try get caught up. After all, I would hate to share the bad news and keep the good all to myself.
Expect trouble as an inevitable part of life and repeat to yourself, the most comforting words of all; this, too, shall pass. - Ann Landers

Wednesday, February 19, 2014

And the Beat Goes On

Amazing news, my dissertation has been approved to move forward for defense. Now I just have to remember what I wrote and present it in a manner that makes it appear I know what I'm talking about. I am so excited to finally be at this point, but must admit that just the thought of the trip to Gainesville exhausts me. My amazing father has decided to escort me and I admit that while I want to believe I am capable of doing this on my own, it is a relief. 

Visited Dr B today. Reminded me to start taking aspirin about a week before my flight.  He also started me on another drug to deal with the hot flashes.  Wonder what I will need to take to deal with the side-effect of this drug? It seems like a never ending cycle.  I'm not sure it has really hit me yet that I am on the maintenance stage. There are no more treatments or surgeries, except for the foob tattoos, but really the hard stuff is over.  I have great hope for 2014, a new beginning of sorts.  I wonder what I will do with all my extra time?  Maybe get a life?

I told someone that I was no evidence of disease (NED) and he replied, be glad they don't call it "no evidence of remaining disease." Then they would call you NERD. I laughed so hard, that would be so appropriate.
“Because one believes in oneself, one doesn't try to convince others. Because one is content with oneself, one doesn't need others' approval. Because one accepts oneself, the whole world accepts him or her.” ― Laozi

Friday, February 7, 2014

Once Upon A Time

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.' - Eleanor Roosevelt
Anniversaries are funny things. They are ways to celebrate joyous moments, but they are also there to remind you of those things that changed your life, and not always for the better. One year ago I got my first mammogram, and was convinced there was nothing really wrong. The little voice in my head started whimpering when they wanted to do an ultrasound, but it didn't start screaming until the radiologist wanted to see me. That seems so long ago now, and yet it has also been the shortest of years. Life now is broken into BBC and ABC. No, not British Broadcasting and American Broadcasting, but Before Breast Cancer and After Breast Cancer. Or maybe it should be BF and AF, Before Foobs and After Foobs.
Don't wish me happiness - I don't expect to be happy it's gotten beyond that, somehow. Wish me courage and strength and a sense of humor - I will need them all. - Anne Morrow Lindbergh
So very true, survival is more than just putting one foot in front of the other, it's laughing when you trip over your own feet. Laughter and friendship make even the worst days possible to deal with.  It is said you never know how strong you are until you are tested, and this year has been more of a test than I ever wanted. Yet as I look towards the end of this journey, and at the end of my life as a doctoral student, I wonder what am I going to do with all this extra time and energy?
Don't walk behind me; I may not lead. Don't walk in front of me; I may not follow. Just walk beside me and be my friend. - Albert Camus
I have been so blessed with the team I have had throughout this journey: friends, family, and medical.  I hope that some day I can pay it forward.  To face adversary and survive is wonderful, but to use this journey to help others I think is the next part of the journey.

Monday, February 3, 2014

Hey Guess What I Have Today

No really, guess. Yup it's another doctor's appointment. This time with the oncology surgeon.  The good news, the visit was short and sweet. Just a quick check of the foobs, some talk about how we will move forward, and some updates. This kind of doctor's appointment I can handle.  Of course there are more appointments with more doctors coming up, but it seems to be nearly manageable now. I guess the docs will have to find someone else to buy their Porsche now.  I am still waiting for the body to feel "normal," to feel like my body again, to not be ever aware of the foobs and to sit up without the tummy scar reminding me of its presence. Still trying to deal with fatigue, nearly walked the dog in my sleep the other day, as I swear I was nodding off as we rounded the block.  I can almost see the finish line, but I can't help but wish I'd already crossed it.

In other news, I have delivered a complete draft of my dissertation to my adviser.  I get to be happy about that for a few days while he reviews it.  Then ... well guess I'll deal with it when it happens. No sense second guessing what I wrote. 
Nothing can stop the man with the right mental attitude from achieving his goal; nothing on earth can help the man with the wrong mental attitude. - Thomas Jefferson

Tuesday, January 28, 2014


Every day when I take off my bra and all my nipple protective padding there is that moment when I wonder if today is the day I'm going to see one of those nipples fall off and roll down on the floor. I mean nobody has time for nipplerollaphobia. These are the things nightmares are made of.

Today I had my first follow-up visit with PRMA to check the status of the latest surgical revisions.  Nurse H was happy with the progress. Only comment was to make the holes in the nursing pads bigger and stop taping them to my breast.  They should now be stuck to the bra itself.  This has lead to some interesting logistical problems.  How does on know where to place the pads and their nipple holes before the bra is on?  Sharpie anyone?  There is probably some geometric formula for this, but I must have been sick that day. Luckily it wasn't a question on the GRE. Still working on a best practice for this one.  Currently it is still a two woman job.  I am sure some day Mom would love to go home, so at some point we will work out some genius way I can do this myself.

So H said I was past the stage where I needed to worry about my nipples falling off; I only need to be concerned if they turn black. Oh yes, much better. 

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold.  They believe that when something's suffered damage and has a history it becomes more beautiful."  ~Barbara Bloom

Wednesday, January 22, 2014

Ah Vanity

I am a week out from the latest surgery. While not as difficult as the first surgery I feel I have lost all the gains I had made. Not sleeping well still. My back still bothers me from the shingles and the hot flashes are very well timed to occur every 1-2 hours so I wake up either hot or freezing and have to adjust the cover situation.  Makes for a less than restful night and the brain is definitely on the fuzzy side.

They seem to have given me a surgical bra one size too small and the foobs are none too happy with it. Luckily I still have the old bra from the last surgery.  I wonder how long after surgery before you could decide the nipples are going to stay in place not be going rolling down the hall. Every time I pull off all my layers in order to take a shower there is always a slight moment of anxiety as I check to make sure they're still where they are supposed to be. Ah vanity, the things we do in your name. Is it wrong to want to keep the nipples actually attached to the breasts? I wonder why our body image makes up so much of who we are, or at least who we think we are. I sometimes wonder how I would handle not having breasts at all. However the idea of not having reconstruction never was a serious one for me. Some day I will wake up feeling normal and hopefully I will feel it was all worth it.

Work on the dissertation continues, and I am actually making progress. Will be sending out a couple of chapters to have some cohort members review. Still not looking forward to having to travel, but that is still weeks away, so no sense worrying about that yet. There are plenty of other things to worry about between now and then. Or perhaps denial will be the way to go. A nice leisurely trip to Egypt may be on the horizon.

"It's not denial. I'm just selective about the reality I accept." - Bill Watterson
or  maybe
"I reject your reality and substitute my own!" - Adam Savage quoting Dr Who

Wednesday, January 15, 2014

Reconstruction Part 2

And so it begins again. One more visit to the hospital to be knocked unconscious and have men rearrange my body. On one hand it is really amazing what they can do, on the other hand is there no such thing as modesty anymore? Abandon all hope ye who enter here. This is just one more step in the process, and one more step closer to being done. Surgery didn't start until 1:00 so there was no having to show up at crack of dawn, of course that was more time to go without food or drink. There is always a trade-off I guess. Had a different anesthesiologist this time, another retired Air Force doc. He mentioned I was still anemic and that there was an extra long beat showing on my EKG. However, he didn't feel that it was significant, and could even be from the positioning of the wires. The body is slowly bouncing back.

My plastic surgeon got out the sharpie and marked everything he was going to work on, but overall he was happy with the shape from the first surgery. I guess that is good, should mean less work to do during this surgery. And less work means easier recovery, right? Right? I hope so. The body and spirit is getting a little tired of all of this. Was a little nauseous coming out of anesthesia this time. Nurse gave me some drug and that helped a lot, but throat was so raw I had a hard time even eating saltines. Ah saltines, the food of champions. No hospital stay this time, we got to bundle me up and head home just about the middle of rush hour. Guess I should have taken a little longer recuperating, but I really wanted out of there.
"You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'" - Eleanor Roosevelt

Thursday, January 2, 2014

It's OK if WHAT happens?

Had another pre-op visit with H at PRMA today. This time is for revision and nipple creation (how odd does that sound?). Surgery should be only 3-4 hours long and the recovery only a week to ten days. I'm taking a week and a half off from work. Hopefully if I remember not to push myself there will be no repeat with the shingles. My back still has nerve pain from that little episode. I was just starting to get back into a routine with work and dissertation. I have even been working out a little at the gym at work. Only half an hour, but still it was a start. I have got some work done on the dissertation as well. Really hoping to get that done by the end of the month.

So, back to the pre-op visit. Don't have to give up coffee this time as there will be no reattaching of blood vessels, so that is  good, for me and everyone around me. Also can stay on allergy meds, which being cedar tree pollen overload time is a good thing. Will have to go get labs done next week to ensure blood counts are in an acceptable range and heart isn't going to poop out on me during anesthesia. Will need to get some nursing pads and cut holes in them to help protect the nipples. The little things will needed padded protection for several weeks. Speaking of nipples, the quote of the day is "it's OK if a nipple falls off and rolls down the hall, we can make you a new one." Huh what? Um no, so not OK. Intellectually I understand what she is saying, it is not medical emergency, it happens, but mentally and emotionally it is so not OK. I don't want to have to go and have this procedure redone, let alone pick one of my nipples up from off the floor. Of all the things to have to worry  about, that was never on my radar.

Tuesday, December 31, 2013

The End of 2013

I finally started writing again. Of course I had to re-read my dissertation to remind myself what it is I was trying to do. Amazing how quickly we can forget even those things that are important to us. I'm sure there was point to all this research, but it's hard to pick up after a several month hiatus; especially one in which the brain took its own little extended vacation.  Oh well, one step at a time and all that. At least I know longer feel as if I need a name tag so I remember who I am.

So will there be a New Year's resolution? I guess it's more of a new life resolution, one that's been building though out this whole mad trip that was 2013. “Live as if you were to die tomorrow. Learn as if you were to live forever.” ― Mahatma Gandhi. OK, I admit it, I've been doing some soul searching as the end of the year approaches. I even found myself listening to a country song:
I was in my early forties
With a lot of life before me
When a moment came that stopped me on a dime

I spent most of the next days, looking at the x-rays
Talking bout the options and talking bout sweet times

I asked him when it sank in
That this might really be the real end
How's it hit 'cha when you get that kind of news?
Man, what'd ya do?
And he said

I went skydiving
I went rocky mountain climbing
I went two point seven seconds on a bull named Fu Man Chu
And I loved deeper
And I spoke sweeter And I gave forgiveness I'd been denyin'

Tim McGraw - Live Like You Were Dying Lyrics | by Nichols, James Timothy/wiseman, Craig Michael.
I've been skydiving and rocky mountain climbing, but bull riding, not on the bucket list. I get the idea though. Stop waiting for tomorrow, and decide to be the person you want to be today. Over the last couple of years I seem to have forgotten how to be a friend, to myself and others. It just felt like too much effort with too little reward. I've been so stingy with spending money that I have put off doing things I've wanted to do, like traveling. Well, that ended up being a good thing as I kind of needed the extra funds this year, but still. I want to go and see and do things while I'm still young enough (relatively) to do them, and not just see places from the back of the bus. My first instinct was to stay home tonight, but instead I am going to get up, get dressed up, maybe even put on some make-up (maybe) and spend the new year with friends.  My journey is not over yet, still have that surgery in January and numerous follow-ups, and follow-ups to the follow-ups, but it's time to join the living again.

Words cannot express how grateful I am for the family, friends, coworkers, and neighbors who supported me this year. So much gratitude to those who helped me keep a sense of humor, who checked-in, sent cards, and were just a source of strength by their very presence even if that presence was only virtual. This journey could not have been taken without you. You all make me want to be a better person, to be worthy of all that you have done. May you all have a wondrous 2014.

"At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us." - Albert Schweitzer

Wednesday, December 25, 2013

A December to Remember?

Well, it's Christmas.  It hardly seems possible that it is nearly the end of December. We celebrated a day early as Dad is off to New England today to celebrate my cousin's wedding. I had so many plans for this year, "(Wo)man plans and God laughs."  I was going to graduate, go to my cousin's wedding, maybe even take a celebratory trip. None of that happened. I've had to be content with watching from the side-lines (oh the joy of Facebook) and reminding myself to be grateful for what did go right this year.  It is never easy to realize you have limits. Delayed gratification? That takes patience; not really something I'm known for.  Strange as it may sound, my frustration concerning this year is less about having cancer and more about having to admit I couldn't do it all. "Once we accept our limits, we go beyond them" -Albert Einstein. Ah acceptance, some days that is easier than others.In other words, I'm still working on it.

The truth is I'm feeling better than I have in a long time. But with caveats (like you didn't know that was coming). I still have nerve pain in my back, my tummy scar still pulls, I swear my foobs swell in the cold weather, and my endurance is less than spectacular. I actually started going to the gym at work, and it's very sad how exhausted I get in 15 minutes.  Mika and I actually made it around the entire neighborhood today, a walk I used to do every morning. Now it's just on days I don't have to work as it is a much slower jaunt than it used to be.  I am trying to make peace with that; trying to not compare before and after. "We can never obtain peace in the outer world until we make peace with ourselves" - Dalai Lama. It is the season to reevaluate, and to give forgiveness.  Sometimes the hardest person to forgive is ourselves, even though there should be no need to forgive ourselves for being human. Why do we expect so much from ourselves and get so upset when we cannot obtain the impossible? 
“I don't know if I continue, even today, always liking myself. But what I learned to do many years ago was to forgive myself. It is very important for every human being to forgive herself or himself because if you live, you will make mistakes- it is inevitable. But once you do and you see the mistake, then you forgive yourself and say, 'Well, if I'd known better I'd have done better,' that's all. So you say to people who you think you may have injured, 'I'm sorry,' and then you say to yourself, 'I'm sorry.' If we all hold on to the mistake, we can't see our own glory in the mirror because we have the mistake between our faces and the mirror; we can't see what we're capable of being. You can ask forgiveness of others, but in the end the real forgiveness is in one's own self. I think that young men and women are so caught by the way they see themselves. Now mind you. When a larger society sees them as unattractive, as threats, as too black or too white or too poor or too fat or too thin or too sexual or too asexual, that's rough. But you can overcome that. The real difficulty is to overcome how you think about yourself. If we don't have that we never grow, we never learn, and sure as hell we should never teach.” ― Maya_Angelou" - Maya Angelou

Wednesday, November 27, 2013

A Day of Thanks?

Really it's been thanksgiving a lot this year. I am  thankful my cancer was caught, thankful it was curable, thankful for parents who dropped everything to take care of me, thankful for friends and family who supported me, thankful for the kindness of strangers, thankful I made it through chemo, thankful for having a medical team I trust, and so many other things. I know I should be thankful to be working, and I guess I am thankful the government isn't still shut-down, but I'm not holding my breathe for a functional Congress next year. 

Of course I wish the dissertation was done and I didn't have to pay for another semester of school, but at least I'm still capable of finishing. Of course I have done almost no work on it since surgery, I'm afraid the writing muse has left the building. I'm hoping that by getting the blog updated the writing portion of the brain may feel some stimulation. Of course the stimulating of the synapses may be nullified by tryptophan and pumpkin pie. 

It is unfortunate that we need a holiday, one that is becoming more and more co-opted by commercialism (yes if you shop on Thanksgiving you are part of the problem), to remind us to be thankful. Every day, no matter how bad a day, there is something to be thankful for. We are inundated by polarizing hate speech these days which tells us who to blame, what to hate, and why we should be unhappy. Enough I say, let us be thankful every day, and do out best to remind others why it is good to be alive.

 "Gratitude can transform common days into thanksgivings, turn routine jobs into joy, and change ordinary opportunities into blessings.
― William Arthur Ward

Wednesday, November 20, 2013

Dr B Follow-up On The Follow-up

Had another visit with Dr B to check how the Tamoxifen was going. Biggest concern is liver function. Haven't received those results yet, but my blood counts are still low. Wondering what it is to feel normal any more, not sure I'll recognize it when it comes, but still looking forward to it. I'm feeling like a walking pharmacy these days with the drugs for dealing with the drugs. I feel like my side-effects have side-effects.  Still having tingling in the toes and fingers, water retention, constipation, and hot flashes.  The nails are just a mess and I keep breaking them. The hot flashes are especially wonderful when they happen at work, got to love working in a cube farm. Must start dressing in layers or I may be forced to poor my water over my head as opposed to drinking it.  That might get me a few looks, but then again, around here, maybe not.  At this point it's hard to tell if the side-effects are residual from the chemo or from the Tamoxifen.  It certainly keeps life interesting, but I really could do with some dull. 

Of course I think I could live with all of these side-effects without loosing my mind if I could just get some sleep. Still have nerve pain in my back from the shingles, which Dr B said can linger for weeks. Isn't that awesome? Can't sleep on my stomach due to reconstruction, left side is still a bit sore from lymph node extraction, and right side has not been an option since I had arthroscopic surgery on that shoulder; I'm thinking there must be a way to hang from the ceiling with my toes. (Keep flashing on a scene from The Lost Boys.) I keep seeing all these commercials for the shingles vaccine these days, and I just want to scream at them as you aren't eligible for that vaccine until you are quite a bit older than myself. Why do I have to be ahead of the curve on these things?  

"We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." — Eleanor Roosevelt