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

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

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

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

A Step Toward Normal

Returned to work today. We got a new boss right before I left and the rumors still abounded as to if the Ed Tech supervisor position would be filled. I had high hopes that the powers that be all came to agreement on where the department was heading in the six weeks I was gone. Sigh, hope spring eternal despite the fact that reality keeps getting in the way. It will be nice to just be a peon for a while, at least until I am feeling well enough to get bored.

Worked about 6-7 hours each day this week. I probably pushed it more than I had to, but I have a slight stubborn streak. Dad did act as my chauffeur however. I'm afraid by the time I'm smart enough to call it quits I'm too exhausted to drive myself home. Some day I may learn to listen when people tell me to take it easy.

"We must free ourselves of the hope that the sea will ever rest. We must learn to sail in high winds. — Aristotle Onassis

The Foob Report

Shortly after changing from the surgical girdle to off-the-shelf shape-wear my back broke out with a rash. Not sure what is going on, but boy does it make it hard to get a decent night's sleep. Not sure what is below exhausted on the sleepless scale, but I've been hanging out there a lot these days. Hopefully Dr A will have some answers or suggestions. 

My follow-up visit with the plastic surgeon today went pretty well. He seemed pleased with the progress so far. Said the lumpy placed in the foobs is normal and I should become familiar with the feel so that I would notice if anything new (e.g., a cancerous lump) ever showed up. Any cancer would be external, within the remaining original breast tissue, not within the tummy fat, so it would be felt by an external exam. I do need to find a new bra or two as mine are leaving marks on the breasts. I don't want to spend too much money as I'm not sure how much of the size increase is due to continued swelling.  Things may also change after the second surgery where there will be some touch-ups.  I'm to continue massaging for 3-5 minutes a day which should help with the swelling and the need to get-to-know the territory. Massaging the foobs still weirds me out a bit. I'm fine with massaging the tummy scar, the only time that gives me problems is when I stand up after sitting or lying for a while. It's like it has to stretch out and I find myself talking to myself "stand up straight." 

To add insult to injury I had H and Dr A look at my back. Imagine my surprise when they said I had shingles. It never even occurred to me that the back pain I'd been having for a few weeks and the rash were actually related and due to shingles. It's good to know I'm not going crazy as far as the back pain is concerned, but really? Dr wasn't too surprised to see it even though I'm younger than the normal shingles sufferer (breaking the curve again) as my body is a bit stressed after surgery.  A bit stressed?  I would call that an understatement these days.  

"The world breaks everyone, and afterward, some are strong at the broken places." — Ernest Hemingway

I Think I've Bought My Dr A Porsche

Yup, yet another doctor visit. Back to the oncologist. Dr B did bring up the fact that he would have recommended radiation if we hadn't already started the reconstruction. At this point radiation would irreparably damage the new foob.  That's what happens when you don't get the pathology report until after your breasts are in place I guess. On one level I wonder what risk I'm running not having radiation, but on the other hand I am relieved I don't have to deal with it.

I did get my prescription for Tamoxifen today. I will be on this maintenance drug for the next 10 years; unless my liver decides otherwise. The side-effects of this drug are mostly just annoying: including irritability, hot-flashes, water retention, and heavy bleeding. There are some serious ones of course such as blood clots and reduced liver function. Well I guess I shouldn't hold my breathe to get rid of the hot-flashes and swollen ankles any time soon. I have to be more vigilant about getting up and moving around on a regular basis while at work.  My blood counts and iron are still low, so still need to be careful about being around people who are sick. I mention that my back hurts more than normal. It has made sleeping difficult, in the bed or in the chair it feels like pressure from lying on something, and even sitting in the chair can be uncomfortable.  Dr B thinks its just a residual side-effect. Maybe if I start moving around more it will go away.

The hair and even my eyebrows are starting to come back. I still wear a scarf when I go out as it's borderline Chia pet still, but the leg hair has come back with a vengeance. The eyebrows seems to be growing from the outside in as they are still sparse in the middle. Oh well it's a look. At least my eyes aren't watering like crazy and I can actually start wearing my contacts for short periods of time. I guess you can't have one without the other. I think the hair is a bit darker than before but it's a little too short to tell yet. One more surprise that will unveil itself in due time.

Not sure how long it will take before these new breasts of mine actually start to feel like a part of my body. Sometime I just want to cry when I look at my scarred and patched body in the mirror. It feels and looks foreign and I almost have to force myself to touch my breasts to wash and massage them. It's almost an out-of-body experience when someone else touches them, just disconnected and not quite normal. I am sure this too shall pass, either they will start feeling more like a part of my body or I will simply get used to the new body parts.     

"He who has health, has hope; and he who has hope, has everything." — Thomas Carlyle   

RIP Mr Juicy

My last grenade, Mr Juicy is still putting out more than 30cc every day. He just doesn't want to go away. Mom and I on the other hand have both accidentally caught or yanked on him over the course of the last month, and just can't wait to see him go. The area around the stitches holding it in is starting to bother me and I just want it gone. Called H at PRMA and asked it it could come out and after checking with Dr A, she said I could come on in. This one felt a bit stranger than the other three as it was pulled out, a it seemed to have settled in. It is such a relief to have it gone though. I just hope my body can reabsorb the fluid with no issues.

I've been blessed with a number of visitors over the lat few weeks. Some dear family friends from California stopped by for a few days. Mika wasn't sure what to make of their little dachshund. Poor puppy, she won't know what to do when life goes back to normal either. My brother and sister-in-law also came for a visit. It was good spending time with them and Mom and Dad got a little support in the take-care-of Jo department. We all celebrated my healing process by going out to Olive Garden as I was finally free to eat salad at a restaurant. It's the little things we sometimes need to hold onto and celebrate. Some friends from work also dropped by, was glad to see them. I feel a bit out of touch, but then again with the shut-down I'm not missing too much. I'm afraid I wasn't the best hostess ever, but I was at least conscious for most of it.  I can't ever say how much it means to have people I love and care about come visit. Personal connections are so important to the healing process, and it's so easy to curl up and let the world go on without you. It takes an effort to be social, but the payoff is worth it.

"In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit." — Albert Schweitzer

The Power of Friendship

Last night I had a dream, and I rarely remember my dreams so this is odd. But they say dreams are where the subconscious goes to work so I guess it shouldn't be too surprising. Over the last three years between working on my doctorate and a couple of job changes I must admit I have been less than a good friend. I have missed, and painfully been excluded, from some important moments in my friends lives. Instead of taking the exclusion as a wake-up call I do what I always do, I pull away even more. So is it any surprise that when I asked for support all I got from some is silence? Why would I expect support from those whose lives I am no longer a part of? I guess I truly have grown selfish in my old age. In my dream I got yelled at by an old friend for something, can't remember what exactly, but I woke up realizing that I was hurt by their silence over the past 9 months. And maybe it's just that they don't know what to say and not apathy, but maybe it's just too late and I let those friendships die well before Feb. 

Over the past few years I have let the job changes, the school work, and the weight of old wounds be my excuse for being a terrible excuse of a friend. Why be surprised when others pull back as I have done? The sad thing is I am not sure I will be better after this. That "I have a second chance, I'm a completely different person" epiphany just hasn't happened. Maybe once I'm off the drugs, but look here I am making excuses. I need to force myself to reengage with the world around me. To be worthy or the love and support I have gotten over the last months.

But enough of the sad, for honestly I have been overwhelmed by the love and support I have received. Saw old family friends this week and now my brother and sister-in-law are here. Friends from work dropped by earlier this week and they often check in via text. The cards and little gifts have been overwhelming, especially those from relatives I didn't even know I had. Every time someone spends the time to just say I'm thinking about you I am grateful. And of course Mom and Dad who have given up their life this year to take care of me and the mutt. I couldn't do it without you. There are lessons here about the power of friendship, of how the little things matter, and of the trite but oh so correct mantra of don't wait until it's too late. 

To everyone who has been there for me, I can honestly say I don't think I could do this without you.  You are amazing people, and I am beyond blessed for having you in my life. I hope some day I can pay it forward.

"When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand." — Henri Nouwen

And The Dream Dies-At Least For Now

Today was the first deadline for submitting a draft of the finished dissertation. I didn't make it. I tried. I had convinced myself that I would get this done while I was convalescing, I mean what else would there be to do? I did several hours of work earlier this week, but I was absolutely exhausted the next day. I am afraid the brain isn't too functional anyway, I read what I  had written and well, it was awful. Guess being tired and drugged is not the way to write the results section of a dissertation.

Had to call my adviser and let him know I just couldn't make it. Not sure I would be up to traveling to Gainesville for the defense or graduation ceremony anyway, and I really want to walk. We won't even talk about the lack of leave. I'm sad I won't be graduating with some of my friends who finished this semester, but I think I was just pushing the body and the mind a little too far too fast. I just have to keep telling myself it's ok, I didn't fail, it's just postponed, it's a forgivable failing. I just hope I can find the motivation to finish. It's so easy to just say I quit, haven't I done enough?
 
 "There’s always failure. And there’s always disappointment. And there’s always loss. But the secret is learning from the loss, and realizing that none of those holes are vacuums." ― Michael J. Fox

Three Down, One Grenade to Go

Went to PRMA to see H for the routine follow-up. I was pleasantly surprised when she removed three of the grenades. I knew the one in the left abdomen wasn't going anywhere, Mr Juicy as he is "affectionately" called is putting out more fluid than the other 3 combined (at least it feels that way). It's a strange sensation feeling the drains pulled out, but she is really good and knows all the tricks. She looks at my scars and foobs and is pleased with the progress, saying I look weeks ahead of where I should be. Nice to hear, but I don't feel weeks ahead. I wonder if I'll recognize normal when I feel it again.

I can call to come back to have Mr Juicy removed anytime over the next few weeks if he decides to slow down. They don't like to keep the drains in too long, as the body will start to heal around it. That idea is just icky. I am also cleared to start wearing a normal bra next week. I actually think the foobs are a bit bigger, at least with the present swelling, so it'll be interesting to see if my old bras will fit. She also gave me a different girdle, one with three layers instead of just the one. This one take a college degree to figure out how to put on. It is more supportive however it tends to also migrate a little. Well nothing is perfect. She approved a little chocolate but still no caffeine. Well a little chocolate is better than no chocolate. 

Still sleeping in the chair, but have a little more movement and am walking around a little better. Occasionally nap in the bed, but still need Mom's help getting up. I have a bed wedge that makes it a little easier, but the body still doesn't want to behave like I want it to. I want to feel whole and strong, now. 

"Patience is not simply the ability to wait - it's how we behave while we're waiting." — Joyce Meyer

Surgical Follow-up

While I am glad to be home there are certain maintenance issues that are a real pain. Poor Mom and Dad, being caretakers is a rough job. I wish I could tell them, if you do X everything will be all better, but that doesn't exist. We all just have to ride out the storm together. But having them with me makes it bearable, I can't imagine doing this alone. There are four "grenades" or drains attached to my body which have to be dumped and measured three times a day. They can't come out until there is less that 30 cc a day. These make it really interesting to dress, walk, pee, shower, sleep, you name it.  I've been wearing Mom's housecoat and hospital gowns as these completely cover the grenades and the lines, but have to actually get some clothes on to go see the doctor. I feel like my grenades are exposed and worry I will catch one on something. Oh well, it's not like I'm moving quickly these days, so hopefully there will be no trauma.

Dr R said I am officially NED - no evidence of disease. Wow, cancer free. Wish I could dance for joy, but I have to be content with a mental happy dance, "I'm walking on sunshine ...".   So even though there was signs of cancer in my sentinel lymph-node and still cancer in my breast after chemo, he feels that they got it all. I am a little surprised no one mentions doing radiation as the chemo wasn't completely successful, but then the only reason we even know that is because I did chemo first. If I had done the mastectomy first we wouldn't even know, so I guess it's good I did chemo first, but not sure it matters in the long run. 

My left breast and arm are sore and tender and I have limited mobility in my left arm. Dr says that should come back, but some never get to 100%. I'm wondering if I'll ever do yoga again, and have to be at peace with the idea that I may never be at the same level I once was. I cannot compare before and after, just be comfortable with the here and now. Yah, this will be a process.

Of course on top of all this the government has shut down as of the 1st, so I am officially without a paycheck.  No stress there. Our good old Texas senator decided to make a point by playing games with people's lives. I should send all my medial bills to him, not to mention the mortgage payment. I was supposed to move from an Army employee to an Air Force employee on the 6th, I have a feeling that won't be happening. Oh well, I'll take some pain meds and go back to reading a good book. I'm getting quite a bit of reading done, none of it academic, and that's alright.

"Expect trouble as an inevitable part of life and repeat to yourself, the most comforting words of all; this, too, shall pass." — Ann Landers

No Place Like Home

I was allowed to go home today after proving I could shower without passing out. I really  wanted to just crawl back into bed after the shower, but powered my way through it and convinced everyone I was up to going home. Good thing my cousin sent my a soft puffy pillow which worked great for the ride home. New foobs (fake boobs - although mine are more like toobs, tummy boobs) and seat-belts don't really go well together. I still feel puffy, sore and the skin is a bit raw under the surgical bra and abdominal binder and I just hope this is worth it. Sitting up is a challenge with the tummy scar going nearly hip to hip. In the words of Robert Louis Stevenson "Vanity dies hard." The things we put ourselves through just to feel like women. I mean really, removing tummy fat to build foobs? It's great, it's awesome, it hurts like hell. I tell myself by this time next year they will feel like a part of me, but right now I am they throb and I am uber aware of them. 

Have a strange sensation in the back of my left arm as well; it is overly sensitive to everything, which is a result of the lymph-node extraction. My surgeon says it will go away eventually, probably when I loose all feeling in the back of my arm. Awesome. One more thing to look forward to. My arms are bruised where the IVs were, they had to take the IVs out of my right as they were getting bruised and tender and had a hard time getting them in my left arm. Add pincushion to the list of sensations I'm dealing with. Maybe I can just hibernate for the next six weeks.

Glad to be home where Mom has set me up in the recliner. This will be my home for the next few weeks, at least until I can manage to get out of bed on my own. The forcing of fluids requires the ability to get up several times during the night. Mika is glad to see me, but is not sure what to make of all of it and seems to keep her distance. Can't really blame her, I'm not sure what to make of it either, but at least we seem to be making progress.


"Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have - life itself." — Walter Anderson

The Hospital Life

Every day is a little better, at least that's what I'm telling myself. I have been using the morphine less and less, and they actually started me on oral meds today. That is one less IV I am hooked up to and one step closer to being allowed to go home. The catheter also was removed, so now I actually have to get up to go to the bathroom. It takes a while to get up and unhooked from everything, so I have to call the nurse well before I actually have to go. We will see how well that goes, I mean what could possibly go wrong? They had to move my IV from my right side to my left due to bruising and swelling. I'm still getting fluids through the IV and it's highly interesting when I have to get up and do my walk about. Also have to de-attach from the breast monitors and attach the grenades; it's a process, but it feels good to get up and out of bed. Having been making short walkabouts around the ward in the evening. Nursing staff says I'm making good progress. I've been coughing and wheezing a bit, not sure what to make of that, I guess too much time on my back and not enough time doing my breathing exercises. Baby steps.

Dr R stopped by again with pathology report. It looks like the chemo did not kill all the cancer in my breast. He is confident however, that the surgery got it all and radiation will not be necessary. The fact that my cancer did not completely respond to the chemo makes me a little uncertain about what that means for the future, but I am now glad I decided to do chemo before surgery. Next time I see the oncologist I'm sure he'll have more to say about it. The doctor doing the rounds for my plastic surgeon says everything looks good and is responding well. The blood flow and oxygen levels in the breasts are good so it looks like I'll get to keep them.

Had a number of friends drop by this week, it was good to see them and talk. Also got a cookie basket from work, they were all shaped like tech stuff, computers, CDs, etc. Too bad I'm still on mushy foods, Mom is sacrificing and eating some for me. I am moving up from broth to oatmeal. Trying not to get too excited. Tomorrow maybe real food, well solid hospital food any way. There is a possibility that I may be able to go home tomorrow. I have to prove I am capable of taking care of myself, well along with my support staff. We will see how I feel after I get up and shower tomorrow. That is the next milestone. I certainly need to shower, but the four grenades make doing anything interesting and slow. Good thing the hospital bathroom is huge with lots of room for people to help me when I need it.

Of course on top of all of this is the news that Congress may shutdown the government rather than pass a budget. Yup no paycheck would just make my year. Trying not to dwell on that, nothing I can do about it, but still, these people really need a conscience and a clue. I must concentrate on those things I can control. Sit up, get up, walk, get stronger.

Post Op Day One-Hello Girls

Somewhat of a restless night, had to be checked every hour so really didn't get much sleep but still feel somewhat rested.  Must be that eight hours of anesthesia. Nurses have a little dopler they use to check for blood flow in the new breasts. They feel somewhat numb and poofy all at the same time. It's hard to explain, I know they're there, I can slightly feel when people touch them, but they don't feel like they are a part of me. Not yet anyway. I have little monitors on each breast that check the oxygen level and they actually glow, so I'm my own little night light. Also have a post-surgical bra and girdle and my movements are very restricted. I feel very helpless and briefly wonder if reconstruction was such a good idea.

Surgery went well, no complications; however, they did find some cancer in the lymph nodes. Dr R ended up taking out all the lymph nodes on my left side. There was also still a lump in my breast. Dr. R came by last night and said they will have the pathology of those probably Wednesday or Thursday and then will decide how to proceed. So hoping it's nothing, but will deal with it, whatever it is. Surprisingly I have a large private room with a view so at least there is no arguing with anyone as to what to watch on TV. I have had three nurses so far R, D and J. All very good and personable. 

This morning I got the breakfast of champions Jell-O and chicken broth. Pain is manageable with the morphine but the worst of it is actually my left shoulder (due to lymph node extraction I would guess). I think I'll get a lot if reading done while I'm here. Silly me I actually brought a copy of my dissertation to edit, but am extremely doubtful that will make it out of the backpack. Mom & Dad will be by some time after 10 but won't stay more than a couple of hours as Mika is the priority. I certainly know my place in the pecking order, and yes, it is behind the dog. I am hopeful that tomorrow I will be able to get up and get out of bed.

Not The Nicest of Farewells

So it's my last day with all original equipment, and what do I do? I go to the hospital and have a needle put into my left breast to insert a radioactive tracer. Um ouch. When Dr P said it would burn he really meant it. The needle was bad, but bearable, but I mean ouch to the material itself. An hour later and I can still feel it. I finally get a cute young  doctor and he's in the room for all of five minutes putting a needle into my bared breast. Sigh there really is no such thing as modesty when you have breast cancer.

After the injection the lab tech L used the machine I was lying on to take a picture and make sure the dye was moving towards the lymph nodes. This will help Dr R tomorrow find the lymph nodes (He actually uses a little Geiger counter. I'm radioactive enough to set off alarms at the airport, or so I've been told. Tempting, but I don't think I'll check it out.) I could see the radioactive material start to spread as I watched the screen for the three minutes it took to take the image. 

Spent quite a bit of time doing paperwork. Hopefully that means the check-in at 5:30 AM tomorrow won't be too bad; other than the fact that it's at 5:30 AM.  At least I get to be unconscious for most of the day tomorrow.  Well here's hoping all goes as it should and I should wake up tomorrow afternoon with a brand new set of tatas.  I guess now I really can get that t-shirt that says "Yes they're fake my real ones tried to kill me."

A Testing We Will Go

So one more thing to do before surgery, besides having to go in the day before to get radioactive sentinel dye put in. (I mean how many times do I get radioactive dye before the super powers kick in?) Had to make a trip to the hospital to get blood tests, chest X-rays, EKG and a partridge in a pear tree. Any negative results can derail my surgery. Let's hope nothing else is wrong with me, physically at least. Now if I could just shut the brain off and get a good night's sleep, that would be awesome, but I'm not holding my breath. At least Mom and Dad get released to go home for a few days.  They're going to see plenty of me after surgery I'm sure a little time back home is welcome. 

So This is What It's Like to be a Ping-Pong Ball

So back to plastics again.  This time to meet with the surgical nurse so she can tell me thing that directly contradict what Dr R said. Sigh. She gave me a 25 page booklet that we went over front to back that contained all the dos, don'ts and time to panics. Most horrifying of all I have to stop drinking coffee and no chocolate as of ... right now.  I can't even drink tea. And I have a coupon for a free Starbucks and I'll get another freebie for my birthday.  Good free coffee going to waste, and it's even Pumpkin Spice Latte time.  The things I have to give up in order to get better. I warned everyone at work that I'll be going through withdrawal. This is not going to be fun.

I of course had myself convinced when they said 4-6 weeks that I'd manage to get back to work after 4 weeks. H seems to think that is highly unlikely and I should just come to terms with 6 weeks. No driving for 3 weeks. No lifting anything more than 10 pounds, no reaching above my head, and I will be wearing the surgical girdle and bra all the time. Oh and I get to pin four drainage grenades to them.  These have to be emptied and measured several times a day. She did recommend buying some white undershirts and cutting them down the middle to wear underneath. At least they can be washed.  Even showering is going to be interesting; have to face away from the water and no washcloths or bath sponges. Just get to lather and drip while attaching the grenades to um, well I guess I can hold them in my teeth. Actually she recommended  lanyard like I use for my work ID. The dog is so not coming near me after about the first week. No repetitive movements either, she explicitly said no housework, so there's something. Now if I can just get my dissertation done during this time.   

Surprise - It's Another Doctor's Visit

So now that my insides are all nice and clean it's time to go back to Dr R. Luckily the effects of the anesthesia wore of rather quickly so I was fully awake while waiting over an hour to see him. Just once I would like to see the doctor, any  doctor, within 30 minutes of when I'm actually scheduled for. Is that too much to ask? Of course it is.

Anyway, now that plastics is on board we discussed the next step - surgery. I decided not to have the lymph nodes removed on the right side, see very little benefit for the pain. I did not realize that I could actually lose some functionality on the left side due to lymph node extraction. Fun. Will have to pay close attention to any swelling in that arm. The biopsy of the lymph nodes will be done before any reconstruction begins as Dr R will have to go back and take them all out if anything is found. During that time Dr A and his partner will be removing my pudge of a belly. If only they would take some from other places as well. 

Dr R mentioned that a number of women who think they want a lumpectomy and then choose chemo first end up changing their mind and go with the mastectomy. I mean the last 8 months have been so much fun who wouldn't want to do it again? Not me. Take them both, but lord I wish the aftermath wasn't so well, aftermathie.  Pain and drainage and tired and sore oh my. Only another 4-6 after surgery and maybe life can start to get back to normal.     

Now I know how a Muppet feels!

Today joy oh joy I had my colonoscopy and my endoscopy. Of course the good times started yesterday when on top of not being able to eat (thanks for bringing pizza with you Mom and Dad) I got to drink some Suprep and get caught up on my reading while hanging out on the porcelain throne. The bathroom will never be the same again, even with the burning candles. Then at 2am I had the privileged to get up and take my second dose followed by 32 ounces of water.  Not a very restful night. Luckily there were Mythbuster reruns on to keep me company while I forced the fluids.

My appointment was at 7am, showed up with my entourage bright eyed and bushy tailed at 6:30. The nice receptionist pointed out the bathroom for me without my even needing to ask. This was probably the shortest waiting time I have ever had though. I think the procedure may have even started before 7am. We were done before 8 even with the two procedures. Of course I was out for most of it. There was that moment of "there goes the last of the dignity" when you are told to turn onto your left side so your hospital gown can clearly show off your posterior to everyone in the room. Shortly after that I got a mouth guard, supposedly to protect my teeth and the scope, but really I think it's so they don't hear the whimpering. The anesthesiologist did his work though and the next thing I remember is waking up.

After woozily getting dressed I was joined by Mom and Dad to get the results. Dr A sat and went over everything. The colonoscopy was clear in the end. No polyps or anything, but will be getting colonoscopies yearly for a while just in case. I just can't wait for the next one. The endoscopy however, was abnormal. Sigh. The pressure I was feeling was due to an ulcer and there is sign of esophageal damage due to acid reflux.  Some of this may be due to the chemo, we will have follow-ups to see. There was also a nodule found and removed. This will be biopsied and I will get the results on Wednesday. Here's hoping for better results than the last pathology report I received. Now for breakfast.

In The Mean Time Let's Go To Another Doctor

Months ago I had extended genetic testing done after being diagnosed with breast cancer due to lack of known family history. The test results showed a mutation associated with gastrointestinal polyposis. The exact nature of this increased risk of colon cancer is unknown but after discussion with my genetics counselor and oncology surgeon we decided it would be best to check for polyps sooner rather than later. Since I'm looking at extensive medical bills this year I wanted to get the testing done this year in hopes of hitting my out of pocket maximum. Besides, surgery still hasn't been set yet so might as well do this to pass the time. 

My gastroenterologist Dr A was very personable and has previously worked in conjunction with my oncology surgeon. His staff was also really friendly and concerned about my current fight. He was in agreement with getting checked out due to what was shown in the genetic tests. The decision was to do an endoscopy and a colonoscopy, oh joy oh joy. I've had some discomfort under the lower part of my rib cage, but have assumed that was due to all the weight I have gained. I guess we'll see if it's due to something else. 

After checking the schedule it was decided we would get the procedure done Monday. I mean hey, why wait. That gives me just enough time to do the prep. Dr A agreed that the prep is worse than the procedure and gave me some hints on how to get the Suprep down. Oh I can't wait. 

Got news today that the surgery will be September 23rd. I was actually hoping for earlier, but what can you do. On the bright side that means I may actually get to enjoy my birthday. Well at least I won't have to spend my birthday in the hospital. This year it's the little things.

Yet Another Visit I Never Thought I'd Have

Today I went to Plastic, Reconstructive Microsurgical Associates (PRMA) with Mom and Dad. This was a tough visit. It is not easy coming to terms with such a large surgery as a bi-lateral mastectomy with reconstruction. At first we sat and watched a movie about all the different options. Mom wanted to know if I was willing to forgo the reconstruction, but that is just not an option for me. I was surprised at how long the recovery period was going to be, 4-6 weeks if everything goes right. I was expecting 2-3 weeks. Now it looks like I'll have to go through all my leave and take FMLA time. That on top of furlough this should pretty much wipe out my bank account. I'm also not sure what type of situation I'm going to be returning to at work, things are a bit unstable to say the least these days. We will be transferring from Army to Air Force on the first of October and that's the easy change going on.

Dr A was not the most personable of the doctors I've been dealing with, but he is very knowledgeable and experienced and that's what counts. He took his time to go over all the options, risks, and possible outcomes. I will be doing a DIEP flap surgery which uses excess skin and fat from the abdomen (rather like a tummy tuck) to construct a more natural breast without the need for implants or the sacrifice of abdominal muscle. Finally I get something out of this experience but surprisingly the surgeon said I actually don't have enough tummy to rebuild my breasts to the same size. I guess I'll have to start padding my bras or eat a lot of cheesecake between now and then. Hm an excuse to eat.

This is probably the closest I've come to tears since this whole process began. It's just a bit overwhelming. I'm also not sure what all of this is going to mean as far as being able to go to Gainesville to defend my dissertation and attend graduation. I am getting responses back for the third round and will start doing the final analysis soon. Maybe I can use the recovery time to finish my dissertation. Now back to waiting for surgery to be scheduled, I just love waiting.

Labor Day

Made another trip to Austin for the long weekend to take advantage of the whirlpool tub. Boy do the muscles enjoy the long soak in there. Too bad the effects don't last longer. Still on the pain meds for aching muscles, really thought I'd be over that by now. Will probably feel better just about the time I have surgery. Fingers and toes and still tingly, it makes grabbing things and typing very interesting when you can't feel the tip of your fingers. I am a certified menace in the kitchen. Still retaining water too, my ankles and feet are huge. If only there was a way to get the water from my ankles to my lawn I could single-handedly fix the drought.

Impatiently waiting for round 3 responses to my dissertation survey. Last round, but only 8 replies so far. If I don't get at least 15 everything up to this point will be meaningless. No pressure. Would like to work on the results section while in hospital (is that twisted?). Time to start sending out the begging and pleading emails. How pathetic can one sound while still being professional?

Work is unbelievable these days. The Ed Tech Dept has started calling themselves Academic Support Support  (I'll let you figure out the acronym). We're considering getting t-shirts made. We are now highly paid data entry personnel - whee! Knew leadership would bring changes but having leadership which holds furlough days against you is highly demoralizing. The one perk we had was flexible hours, that has now been kicked to the curb. Walking around you see a lot of computer screens showing USA Jobs. I am not in a position where I can bail, maybe they will settle down by the time I'm healthy enough to start looking. Hear that, that's the sound of me not holding my breathe. Right now the powers that be have managed to do what cancer could not, make me not give a .....

Back to the Surgeon

After several days of stalking his office trying to get an appointment finally got in to see Dr R. Does every doctor have two offices? Does that give them more golf course options? The good thing is this office is actually closer to work than his Stone Oak location. Mom had an appointment of her own today so it's just me and Dad this time. Dad is my official note taker for these appointments.

So there are three options on the table:
1. Lumpectomy with lymph node extraction. Chance of local recurrence and probably a very odd looking breast. Radiation is also a probability with this option.
2. Single mastectomy with immediate reconstruction. The odds of the two breasts matching is somewhat low. Also burn the bridge for using the stomach mound for breast tissue should I get cancer in the right breast. That is a one shot deal. Will always have to worry about and closely watch the right breast.
3. Double mastectomy with either implants or the flap surgery (natural tissue) for reconstruction. This option lowers chance of recurrence dramatically as the only breast tissue left is basically the skin. No need to have MRI and ultrasound followups every six months. Also breasts will match. Hey I'm 40and single, it matters.

No matter which option the nipple is gone. Bye-bye. Hasta la vista, baby. Had a nice 40 years together but probably won't make it to 41. I really don't ever want to deal with this again. I used to wonder at women who get perfectly good breasts removed because of the chance of cancer, not any more. Take them, get them both out of here. Now just to decide if I want the expanders or the free tummy tuck.The recovery time for having fat moved from one area to the other is longer, and it's more involved than I thought, as it includes blood vessels to keep the tissue alive. Having expanders with either saline or silicone is the other option, perky breasts for life, but it is not as natural looking as unlike with getting them for enhancement purposes, there is now no breast tissue to hide them behind. They can look a bit, well, bumpy and need additional cosmetic surgery to even out the edges. Insurance companies will cover either as the natural breasts are more expensive on the outset, but do not require long term care (or replacement). 

I decide to go all natural even though it's a 6 hour surgery with a 5-6 day hospital stay. I'm wondering if I'll be in the hospital for my birthday. Oh yeah! Maybe I'll get a candle in my Jell-o. I really don't want to deal with any of this later on though. Besides I'm more of a natural type gal, and oh ya, there's the free tummy tuck. Finally I get something out of this. Next week I get to see plastics. Never thought I'd say that, but my surgeon says these guys at PRMA are experts at reconstruction, that is what they do, it's not a side job for them after nose jobs and butt lifts. Also have an appointment with a gastroenterologist next week as my genetic tests showed a mutation in the gene for colon cancer. I'm so looking forward to having that checked out. I can't wait for 2013 to be over.

Hey Look It's Another Follow-Up Visit

Had a follow-up with Dr B today to go over all the test results. Work has been absolutely crazy (and not in a good way) with the new leadership and I got out a little late to go pick up Mom and get to Stone Oak. Had never been to this office before so actually passed right by it and was about ten minutes late. Of course Dr B is never on time so we still sat around for nearly two hours and then had a ten minute visit. I'm still gaining weight even though I ate nothing but soup for about a week. Not sure how that works. I still blame the steroids but I'm sure the lack of exercise doesn't help. I think I need to go shopping for a fashionable tent to wear. 

Test results were on the positive side. There is no sign that it has spread or any sign that there is any cancer in the lymph nodes. There is no way to tell for sure until they remove some lymph nodes during surgery. The mass has gone from 2.9x2.2x3.0 to 1.3x1.5x1.4 which means it responded to the chemo, but it is impossible to tell what is cancer and what is scar tissue. That will have to wait until surgery. Ah surgery, something to look forward to, ha. I've known it's coming since the start, but that doesn't mean I am looking forward to it. Dr B not willing to take radiation off the table at this point. Will meet with the surgeon next. We will see what our options are. I have an idea of what I want to do in my head, but will wait to see what Dr R has to say.

Follow-up Number Two

Had a MUGA (Multi Gated Acquisition Scan) and a PET scan today. Fist time for both of these. The MUGA was to check my heart, to see if there was any damage done by the chemo drugs. Don't know if there is damage but boy do I get tired just walking up a flight of stairs. I seriously feel damaged. I can't believe how little things make me winded. It'll be a while before Mika and I get back to a couple miles a day let along working out. The body is so stiff that the most basic of Yoga moves is difficult, but I can still touch my toes. At least I'll have plenty of padding to use if I go with the tummy-tuck and reconstruction.

Mom and I spent most of the afternoon at the START Center between the MUGA and PET. The MUGA was first, and the nurse was awesome, being a survivor herself. There really is a feeling of sisterhood between total strangers. We are survivors and while no two journeys are the same there is a now a tie that binds you together. The MUGA is definitely different than an EKG. You lie on your back and basically have a scanner just inches away from your chest and then lie there for about 15 minutes while it takes an image of your heart. It then rotates slightly and takes another image of your heart. Unlike the EKG you can't watch while it works. I had started to doze off when the PA system paged someone, surprised my reaction did not ruin the test.

Went back to the waiting room after the MUGA to wait for the PET. They make up the radio-active tracer specifically for you so you can't go early. The technician pushes the tracer in a vein and then you have to sit in a room for 45-60 minutes and wait for it to work its way through your system. Like so many I have met along this journey the technician was personable and professional, talking me through the whole procedure. Some day someone is going to have to explain to me just how this PET thing works. There are two separate domes and you move in and out of them several times. For some reason the set up reminded me of something you would see out of Star Wars, some hut on Tatooine. The worst part was that there was a gap between the two domes and you ended up staring directly into the ceiling light as you passed from one to the other. Ack! Have yet to figure out why I can nod off during these tests but not sleep at night.

Was exhausted by the time we got home. Didn't help that I had to be fasting for the tests. Not even coffee. Mom walked Mika that night as I was totally useless.

First Follow-up

Had my first post-chemo test today. Had a oh so fun MRI, once we finally got there. Got a little anxious when we got stuck in a major traffic accident on the way. Poor Mom having to put up with me. Good thing I have Google Maps on my phone so I could find an alternate route. We were about 10 minutes late, but I had called and they said no problem. 

The MRI was about as much fun as last time, face down, breasts hanging down, sternum resting on cold bar, arms stretched out front; but this time my technician was a woman so she was able to help position me so it actually wasn't as bad (or the mind forgets pain). Not as much pressure on the sternum. Of course the muscles ached before so it was uncomfortable. Deep yoga breathes. Glad Mom was there to drive home as I felt still by the time it was done. Next is the MUGA and PET, then next week we'll get the test results. No anxiety there.

The Elephant in the Room

So the mastectomy. It's a reality that's been hanging out there for a while but I've been kind of ignoring it will trying to get through the chemo. This weekend in the paper there was a letter in one of the advice columns from a woman who wrote about how her husband hasn't sexually touched her since her mastectomy 10 years ago. That really wasn't had wanted to read, but it is the reality I'm expecting. The last three years my social life has been on hold while working and going to school. There would always be time to date, to enjoy myself even if I never found "the one," even though I'm uh-hum middle-aged. Once you've  had breast cancer, once you've had a mastectomy, how do you date? How do you start a relationship with that reality? What's the protocol for that? Second date "oh by the way this one is fake, the real one tried to kill me." Or is that not til the third date? 

I know that technically the fact that I've had cancer doesn't make it more likely that I will have cancer in the future. There's never any guarantees in life for any of us. But still as much as I pretend nothing will change, it makes a difference in the way I view myself. As much as I pretend it's not a big deal, they are taking a part of my body and that changes things. It's not just fat and tissue although they are welcome to the fat, it is part of what makes us women, it's part of our body image and I can pretend .... well I can't even pretend it doesn't matter, it matters. And if it matters to me how can it not matter to someone else?

Great Expectations

That's the thing about expectations they're expected but not always met. Worked from home Tuesday, then went in on Wednesday. Not sure that was a good idea. The big news of course was that our furlough days have been cut down to six, which means only one more week. Was completely spent by the time I go home. Mom was very concerned as I was barely able to eat anything before heading to bed. Didn't even attempt to work from home on Thursday. Thursday was awful, but made it through work on Friday-barely. 

Throat is as bad as I can remember it being, kept me up part of the night between the pain and the expectorating (learned that word from Beauty & the Beast). Had expected  to feel better today, at least have some energy and be able to eat. Instead I'm barely able to get out of bed and consume some warm water with honey. I really should be working on my dissertation but can't even be bothered to turn the computer on until nearly 4 PM. Oh, congrats to the cohort members who graduated yesterday, you really deserve it. Hoping that will be me this fall. But right now I'm struggling physically and mentally.

Friends and family have been an awesome source of support, even dropping off dinner for Mom and Dad. It looked and smelled awesome, but throat just not up for it. I haven't even touched the chocolate shake Dad got me. So looking forward to eating like a normal human being one day. Knowing this is the last treatment helps but, I guess not unexpectedly, it's been the hardest. Knowing what is still to come also weighs  heavily on my mind. First thing first, take care of self so I can function again. One last furlough day (yeah down from 22 to 11 to 6) to take advantage of to heal, then rounds of tests, and then to worry about saying goodbye to an old friend. 

The 8th Round Blues

Seems like I say this every time, but each round seems harder. I wonder if I'm just getting so tired of this I can't deal with it or if the effects are truly getting worse. Round two surveys are coming in for the dissertation and I just can't seem to find the energy to start working on them. I know I need to, if I don't get this dissertation done now I'll probably never graduate. I just can't start over, that is too much to think about. There is too much time, energy and money put in to give up now. But there's just so much to do both for the dissertation and just to get better that it seems overwhelming some times. 

And then there's everything going on at work. New leadership, new roles, new expectations, and I just need to learn to let go of that. But I feel like there are people counting on me. Maybe it's just ego, the world will not stop spinning if I cant get everything done. Maybe it's time to just worry about me but I have a hard time doing that. Today I'm at my parents house trying to pull my act together. Love their whirlpool tub but it only helps so much for so long. Monday is a furlough day so while there is no pay and that really hurts on top of it all, it does give me an extra day to recuperate. I really need to get motivated, I need to find some energy, I need to find some focus, but really I just want to go back to bed. I think it's time to revisit that whirlpool tub.

Ugh

Each time I go through chemo I think I know what's coming and yet I'm always taken by surprise. I keep hoping this time I'll be better prepared, better able to cope, but I should know better by now. This morning takes me by surprise. I don't know where that Mack truck came from but I think it stopped and backed-up a couple of times. I wonder if that light at the end of the tunnel is a good thing or just the freight train coming. I don't know why my hands and feet are numb and swollen, I guess it really doesn't matter; in fact why is inconsequential, it's just a matter of dealing with it. I keep having to remind myself that in the scheme of things this is just a little thing. So many others out there in pain and suffering more than I am. That doesn't negate my journey, but it is hard not to compare. I do not fear beating this, but I do wonder who I will be at the end of this journey. Things have changed in my life, it would be a lie to say differently. Keep going back and forth between wanting to curl up and let the world just go bye, and wanting to hold on to people and relationships that I once took for granted. Yet at the same time I feel guilty every time I ask friends to go out of their way for support. The thoughts that go through your head at 2 AM are sometimes just not helpful, but what can you do? Take some pain meds, drink some Pink Magic, soak in the tub, and scratch the puppy's belly. Keep working, writing, walking and trust that next year you will be stronger, wiser, and better.

And the Research Goes On

Oh yeah the dissertation continues. A three round Delphi study? What was I thinking? Well I guess I wasn't thinking I'd have cancer while trying to do dissertation research. Silly girl. Currently I am trying to do qualitative and quantitative analysis on the first round. I will never be a statistician when I grow up.I am taking advantage of my furlough day to work on my dissertation and hopefully help the body heal. It might be nice to have the extra day of healing but the lack of paycheck is going to hurt.

Got a good response rate for round 1, although some comments were unexpected. I know one response was that I should start over as I was on the completely wrong track. Not really what I wanted to hear, but it's interesting insights and maybe something for future research. While his insights were often valid, I'm not starting over the dissertation as they were mainly outside the scope of the research I am doing. It'll take a while to get all this done as it is. This research is not the be all end all of simulation in Allied Healthcare, in fact as the panelist noted it many ways it will probably leave more questions than answers, but you have to start somewhere.

I won't go into how I messed up the first round of surveys (save for Adobe Reader - doh). Don't know if that was just mental fatigue, oversight (I mean doesn't everyone have Acrobat Pro?), or if I would've done that without the chemo brain. Probably, who knows. Luckily most of the participants have stuck with me and have been very understanding. Not that  I have told anyone that I'm going through chemo or anything, I don't want anybody doing this out of guilt or bias anyone. Now I just have to hope they stick with me through the next two rounds. Now to do the qualitative analysis while the brain is half-asleep; this should be interesting. Lord give me strength and moments of clarity. Hopefully I learned my lesson on the first survey and can manage to send out a working survey for round  two.

On another note, anyone who's known me for a while knows I have a little bit of a temper. I've worked hard over the years to get it under control, and most of the time I think I do a pretty good job. But the fatigue, pain, steroids?, and yes the fear sometimes takes its toll; and in those moments its always those closest to me that seem to get caught in the crossfire. Those who are sacrificing to help me get better, to take care of me, and my house, and my dog. Those who deserve so much thanks and praise, and sometimes I let them down. I hope someday that I can make it right.

Fear, loathing and faith

I've been asked if I am angry, or if I blame God for my cancer. The honest answer is no. I really haven't felt anger, and I certainly don't think God punishes people by inflicting them with diseases (sorry you wacko televangilists). Why not me? Does anyone deserve this? No, but that doesn't mean I'm going to start smoking, dipping, and doing other things which are related to higher increases of cancer. Do I think we as a people have poisoned this planet willingly turning the air, food, and water toxic so a few may profit. Absolutely but that is a rant for another day. Do I wish there was a cut and dry scientific explanation for why me, you bet. Even a "it was all that ---- you ate or drank or whatever" would put the academic in me more at ease. Maybe some day they will understand more, but for today I choose to move past blame, anger and fear. I refuse to worry about what I should have done differnt as that is in the past, even if I knew what I should have done different I culdn't change it. I don't see God in my cancer, I see God in my healing, in the friends and family who surround me and pray for me, even those I have never met. When I say thank you for praying for me I mean it.

Now when I say I'm doing fine, that may be a lie. A lie to you (after all do you really want to know about the pain, fatigue, bloating, yucky mouth, hot flashes, forgetfulness ...) and a lie to me. Just pretend its fine and it will be right? There is a fine line between denial, courage, and stupidity. I seem to wobble on that line every day. At any moment I expect someone to call me out on the fact that I'm faking it, that I can't seem to focus or think straight. Some days it's all I can do to form a complete sentence, and yet here I am trying to fill in as Department Head, write a dissertation, finish a paper for publication, and oh yah let's write a blog. So why do it? Why keep trying to act like my legs aren't shaky, my nails aren't brittle, my muscles aren't screaming, and my IQ hasn't dropped by half? It's not just that I'm trying to fake my way through cancer I honestly don't know what else to do. If I let go for a moment I'm afraid I won't get up again even though there are times I just want to curl up in a corner and let the word go by. It feels that if I give up one thing it means I'm quitting and that seems to be the greatest sin of all.

Homage

I realize that I need to make it clear that I do not plan to use names in this blog and why. Partially it is because I owe so much to so many and I would hate to forget someone, but mainly it is because I do not feel it is my place. I try not to mention anyone by name here, or even give too  much detail about what they have personally said or done to help me, not because I am not appreciative, but because often it is not my story to tell. This is my personal journey and how I have chosen to deal with it, those who are there for me have their own stories and it is their choice how or if to tell them. I have been amazed and blessed by amazing friends, family, cohort members, and co-workers; and the ability to sit down and write this blog is partially due to their love, prayers, and support. There are some strong, courageous, and amazing survivors in my life, and I thank them for demonstrating how to move forward with my new reality. Some of these women I knew before I was diagnosed and they amazed me then, I am in their debt now. The impact of their support, and the support of others I have met along the way, cannot be overstated. They make me stronger simply by being there. Each and everyone of you who has asked me how I am, offered to help, sent cards and care packages, offered prayers, made me laugh, and have provided a shoulder to lean on, thank you. As much as this blog is to mark my journey it is also my tribute to you.

Round 7 - Is That Light at the End of the Tunnel a Train?

Seeing the light at the end of the tunnel. Only one more after today, which is good. I've hit the wall and the wall has hit back. Dr B is great as always. He is very happy with the progress and thinks everything looks like it is on schedule and responding well. So it looks like more tests three weeks after the next chemo, and then we'll visit the surgeon again.

Dr B  said all the blood work looks good and the fatigue, hot flashes, and muscle aches are to be expected. He and his nurse J did recommend a few things to try. So we will pick up a few more drugs. Oh joy oh rapture.  Just love taking more drugs. I gained 7 pounds between last treatment and this one, I blame the steroids and lack of exercise. I'm sure the carb cravings have nothing to do with it. Hard to exercise when you're tired and your muscles hurt, but I am still walking Mika most mornings, although Mom and Dad did take her to Austin for a few days. Poor puppy gets the short end of things these days. Thankfully Mom and Dad are willing to spoil her rotten and when things finally get back to normal there may be some pouting involved.

It is wonderful to see some of the same people at the treatment center. Sounds strange but you do make some nice connections when you see the same people week after week. Shared misery is easier to bare I guess. Have a new oncology nurse who is very nice, but still miss S. It will be nice when I never have to be here again, but I can't complain about the service.

Dissertation work continues. Results from Round One of my survey are being returned. Yeah! Not 100% return rate, but enough to get good data (I hope). I just have to keep my fingers crossed that everyone sticks it out for all 3 rounds. I did have a chemo brain moment when I first sent out the survey, forgot to save it so it was comparable with Adobe Reader duoh! Doesn't everyone have Adobe Pro? Now I have to figure out how to do all that statistical analysis I said I would do. Ah well, that's what the weekend is for, all 3 days of it now thanks to furlough. The extra day may be nice, but I just may cry when I see may pay check.

And Another One Bites the Dust - Round 6

My first treatment without S as my oncology nurse, but L was very competent and friendly. I got several new prescriptions from Dr B for the muscle pain and watery eyes. I have given up the contacts all together, glad I spent the money on new glasses. Dr says without the steroid drops the watery eyes will turn to dry eyes, so I get to look like I'm perpetually crying. Surprisingly, despite how tired I feel my lab results are good. Dr B said my responses and side-effects are normal but I don't feel normal. I know compared to what they could be I'm lucky to have minimal side-effects, but it is still rough going. 

I did get out of the house this time and went to see Star Trek with a good friend. We are down to 11 days of furlough and as of July 8th will have one less day of pay every week. The loss of pay is going to hurt but I will have an extra day for healing without taking a sick day. Still working on the dissertation, but work is slower than I had hoped. Just feel so tired and the brain is in neutral. Really just want to curl up and forget about anything that requires thought, but that is just not an option.  

And the Last Woman Bales

So it is now official. The woman who was working as our supervisor filling in for the Col has given noticed. What is it that they know that I should know? Not that it matters, I can't go anywhere any time soon. I try to do my best as mock department head, but I have no actual authority. Everyone at work is nervous and not surprisingly moral is low. Of course there are those who seem to revel in causing discontent, but even the best people are struggling. I mean really, furlough, lack of stability, talk of RIFs, and no one to go to for support. At this point I have no desire to ever apply for the department head position. Let me go back to being a peon, and worry only about getting better. Of course I keep doing what I can at work, and hope that things get better when the new leadership gets on board.

Furlough ... Furlough Come and I Gotta Stay Home

Well we all knew it was coming, but today we got to officially "agree" to be furloughed. Here sign this letter saying you willingly take a 20% cut in pay because the politicians have convinced the American people that you are the enemy. It is your laziness and incompetence that is the cause of all that is wrong in this country and freezing your pay and demonizing you hasn't been enough. Now we take your pay, and that will make the country stronger. Why do people believe this crap? Why are so many willing to make other hard working people the source of their anger? Because we make so much? Seriously? Take a look on USA Jobs and see what we make, bet its less than a comparable job in the civilian sector. I know I took a pay cut when I went fed, but it was supposed to be stable. But now wanting stability is just more proof of what terrible people federal employees are. I truly hope people wake up some day and realize it is not the people who work for a living who are the enemy, it's those spouting hate and anger and trying to convince you that working against your own self-interest today will give you a better future. Of course I'm not holding my breath on this one.

Finally got IRB approval so started sending out invitations to participate. I am hoping for at least 25 individuals, but I'm starting later than I had hoped, so many of my invitations get out of office replies.  I hope not everyone is on summer break.         

Did Anyone Get That License Plate Number?

So much for my hope that the effects of the taxotere would be comparable to the first four treatments. I feel like I was hit by a truck. My mouth and throat are sore, the fatigue is more pronounced, my muscles ache and my toe nails look like they are wanting to fall out. They're tender but so far not to the point where I can't wear shoes. Using tea tree oil on finger and toe nails in hopes they can be saved. Only time will tell. The eyes have started randomly watering, now that's a fun side-effect, so I decide it's time to update my glasses. One more expense I hadn't planned on, but I can tell contacts are not going to be an option soon. Dr gave me some steroid drops for my eyes, that should keep them moist (watery). The option is for them to dry out, guess people will just have to get used to me looking like I'm crying for no apparent reason.  Bald, fat and weepy, I'm a real catch.

Well the hope that the insurance company would be logical and agree with my oncologist that moving treatments back to Monday would not be an issue has been dashed. Sure I can go back to Monday, if I pay for it. Jeesh, what difference does it make to them? But with furlough coming it just makes it a pain to do Tuesdays. I hope they'll let me move my furlough day to Tuesdays for those three weeks. Can't anything be easy?

The 5th Poisoning - Taxotere the 1st

Had to go in on Tuesday instead of Monday due to the holiday. The center was very busy as all of Monday's patients had to be moved to Tuesday. The holiday did make it possible to go to my nephew's graduation, but I hope it doesn't mean I'll have to stick with Tuesdays for chemo days here on out. Surely the insurance company will let me move back to Mondays (yah right). 

It is my last time with my chemo nurse S as she got a better job closer to home. Sad to see her go but know she's found a good opportunity for her. Now there is only one drug and this is given through the IV, so no more having to get the red stuff pushed by hand. This means it should go faster, but still have to watch for side-effects. Not sure what to expect with this one, hope side-effects are minimal. 

Still waiting for IRB approval on the dissertation, so making some edits and doing some research on who to invite to participate, but getting anxious waiting to get started. Not sure how the timing is going to work out with chemo treatments and then surgery. I'm hoping I can work the three survey rounds around my treatment schedule. Just hope I'll be able to make it so that I can go to Gainesville in the early fall to defend. I really don't want to pay for another semester, not to mention I am really ready to graduate. Hoping to have a social life in 2014, but first to get through 2013.

Graduation and a Last Day

Well the boss gave notice and will be moving on. She called to tell me as I was home dealing with the after effects of the last chemo. Totally unexpected but just one more change to deal with. Of course that also means I will be taking on the role, all the responsibility and none of the authority, or pay, until they can hire someone. Oh wait we're in a hiring freeze. Oh goody, this should be fun.

I actually manage to get out of town. Thanks to Mom and Dad and the RV I am actually able to go to Arizona to see my nephew graduate. It's a drive by in the truest sense of the word. Two days up, see graduation, two days back. I barely make it through graduation. Sitting on bleachers in the Arizona heat is not my idea of a good time, and the body is extremely unhappy, but what can you do? It is a nice ceremony and I actually managed to get a picture of him walking across the stage. Good thing for telephoto. I know Mom and Dad would have liked to have spent more time out there, but they sacrifice for my sake. Mika is allowed in the house and is introduced to the two cats. It is mostly peaceful, but I'm sure all animals are relieved when we pack up and go.

His graduation is also my boss's last day. Selfishly I'm worried about still being able to work from home as the Col is getting ready to PCS as well. At least there is one department head left who will be acting as our supervisor. I really do need to start playing the lottery.

Round 4 - Half Way There

After today there are only four more to go - only. The fatigue is becoming more pronounced and my weight continues to go up, and up. I'm still working, writing the dissertation, and working on a paper, but joke that its a good thing I have to wear ID at work so I can remember what my name is. I think I need to add an "If found return to ...." message on the back. Everything is harder, the poor puppy is getting shorter and slower walks. Good thing her grandpa is around a lot to take over the walking duties. Missed one day of work last round, we'll see how this time goes. Got to keep an eye on that leave. Haven't done FMLA paperwork, and hope I won't have to, but I suppose it's good to know it's there just in case. 

Of course the upcoming furlough may work in my favor as far as leave goes, but I can't really afford the pay cut. These out-of pocket expenses are starting to add up, but I've gotten a pretty eclectic collection of head scarves thanks to some friends and family. Everything from leopard print to pink to Bronco's colors. For once I can actually color coordinate my wardrobe. Wonder if there is someplace to donate these things once I'm done?

Red blood cell count was borderline this time. Also had low platelet count but Dr B gave the go ahead for the chemo. Really didn't want to get off schedule so while I expect the fatigue to come hard and fast I would rather move on than wait longer. Will be sure to force the fluids, bran, and prune juice to keep things moving this time. I feel like a woman twice my age and my diet sure looks like it. Have to limit eating raw veggies due to neutropenia and supposed to stay away from empty calories, but these days I really only listen to the carb cravings. Mmm tortillas .... time to try to eat something I think.

So Let's Write Another Paper

So what does one do for fun when going through chemo and trying to write a dissertation? You write another paper for publication of course. I decide to work with one of my professors and cohort members on a publication. This one I will first author. I mean if you're going to do it ... I wonder if I'm completely crazy, in denial, or just in need of something to do to help keep the mind occupied. Probably D, all of the above. I hope I haven't agreed to something I can't follow through on. Lord give me strength, and give me the wisdom to learn to say no.  

I decided that I needed something tangible to hold on to to track my progress. A countdown of sorts. I found a beaded necklace at the Pink Ribbon Shop and decide I will add a bead for each round. It comes with six, so will need to get two more at some point. Sometimes you just need something symbolic to hold onto. I know a countdown should start with eight and take one away each time, but then what would I be left with? Nope, might as well have something to show for all of this.

Dissertation Proposal Defense: Seriously

So the mind is mush. I want to go to back to bed and I have a sticky note with my name on it in hopes I don't forget what it is. That is only a slight exaggeration. I really don't feel up for this. I am glad I get to do my proposal defense virtually, I don't even have to be on camera. Just display my brilliant PowerPoint, haha. I really am glad they don't get to see me and my bald head, dark circles, and blank stare. I somehow manage to make it through the presentation. I only skipped one slide completely. I managed to fake my way through the questions and end up with only some minor changes before I can move forward. Next step IRB. We'll see how long that takes. Once that is done I can try to find willing participants. It may all be for naught if I can't find people willing to participate. 

Then again it may all be for naught if I can't get the brain to engage. How much longer can I fake it? I can't seem to compose a coherent sentence or keep a thought in my head. If I don't write it down it's forgotten forever. At least I think it is, I can't remember ...

Poisoning Round 3

This time I had chemo before seeing Dr B. Nurse S did the blood work and everything came back fine so we were good to go for another round of poisoning. Have gained five pounds. I mean seriously, can't I get a break? I blame the steroids, but still I'm going to have to go shopping for a mumu. Wonder if they'll let me wear sweats to work. Treatment went pretty quickly, only one more of this combination, then on to four treatments of the taxotere.  I hear that one can be rough. 

Dr B examined my lump and he concurs with my assessment that it is smaller. That's a good sign and we'll continue with the chemo.  I worked from home only one day after the last round, so all in all not too bad  as far as side-effects. Still I feel so tired. And what's with the hair around my ankles? Seriously? It falls out from everywhere except my lower legs. There is truly no justice in this world. I wish my eyebrow would finish falling out. They seem to have started in the middle and are slowly working their way out. Well it's a look.

Talk at work is that we may be down from 22 furlough days to 14. Why is it too much to ask for our elected officials to work things out without making people suffer for political points? I really need to win the lottery so I can afford my own private island. 

30s and 40s Support Group

Went to another support group today. Sometimes I still wonder if I'm in denial. Some women today seem to be overly fearful; no raw veggies, afraid to drink out of a water bottle, afraid to eat all. Why chose fear? I understand wanting answers, wanting a reason, but you still have to move forward. I don't I don't know why I got cancer so I don't know what to do or not to do in the future. Maybe it was all that Aqua Net in the girls locker room in High School. The 80s were pretty toxic as far as hair care products. I understand this is a frightening but all we can do is our best. Each woman is having a different experience of course and responding differently as well as coming from a different place, I must always remember never to compare.

Surprisingly I had my period this week. I guess we'll see what happens from here on out, if I ever have another one. Doctor says I may and I may not. I guess I will always have be prepared. Whee!

Bring On Round 2

Chemo round two. Saw Dr. B first and got EKG results. All normal. At least something was normal. Blood work surprisingly was well, normal, including white blood counts. Surprised but happy. Means I was good to go for second-round of poisoning. Hair is still falling out. Surprisingly being the really short is even more annoying than when it was shoulder length. Harder to clean up. Still waiting for the arm and leg hair to fallout though, it just doesn't seem right that I still  need to shave. I mean come on, give me something. 

Treatment went smoothly, no headache this time. Met some very nice people today, shared experience leads to shared comfort.  In the afternoon I start to feel a little headache coming on but not as bad as the first time. guess it is just time for a nap. 

Someday soon I will have to send the dissertation to my adviser and hopefully to my committee. Can't wait to do a defense with a chemo brain.