Thursday, May 31, 2012

Snitches Get Stitches.

This week has been full of stitches. Trying to keep stitches in, trying to get stitches out, stitches in our sides from laughing too hard. One week ago I was running around, post surgery trying to check off box after box in a seemingly impossible checklist of medical appointments that needed to be accomplished before we could pack up the kids and travel over and entire ocean and then a continent.  I am now thoroughly convinced that - hospitals are THE worst places to accomplish healing and that getting up and moving around moderately- or with purpose is good for healing.  With my ever protective husband and neighbor in tow, carefully guarding against over-doing it- we managed to get it all done.

We made it all the way downtown to talk with a nurse who would help educate us with the tools we needed to combat lymphedema(swelling related to accumulation of lymph fluid after nodes are removed) especially during flight. Due to the location of the shark bite on my arm, a standard compression sleeve is not an option yet- as it puts too much pressure on that incision. She tells us that a simple wrap can be effective, it just may need an extra person to help. She leaves and returns with a grocery bag of supplies. She briefly explains the process as she begins the wrap- it is one organ removal shy of complete mummification.  You begin with a soft gauze wrap, followed by a sock that is twice as long as your arm, you then take batting(you know the kind you put in quilts or pillows) and wrap that UP and DOWN the arm.  Then you get the first type of ace bandage and wrap the hand and wrist. You fasten that with tape then get the second ace bandage and wrap that the rest of the way. The sock is then pulled down over that to cover the whole mess.  I am laughing so hard I am crying because - it's hot, it's heavy, it's huge and it generally blows. Don't try to do this before airport security, they will probably make you unwrap it- and make sure you have it on a bit before you fly- and leave it on for awhile after you fly and anytime you are moving around. Sounds convenient to have a bulky arm that I can't bend on an airplane where I am supposed to keep moving around to prevent blood clots in an already clauterphobic environment. I swing it around like I am batting a ball. I pretend to do the robot- at this point Phil is in stitches. We are both laughing at the ridiculousness of it- we are crying- full up tears streaming- belly hurting guffaws. She smiles awkwardly at us- it is really great that you both can laugh through this tough time.  We compose ourselves to be good little lymphedema students as she unwraps my arm- Phil has to prove himself to be competent at wrapping before we can leave. As he gets halfway up my arm(in half the time she took) I do a robotesque twitch. We again are in stitches.

The next appointment is to order a compression sleeve that I cannot wear in a buiding that smells like a kennel and is making me nauseous.  She does not want to order a sleeve until the post surgical swelling goes down and we spend another hour doing the dance to check off a box.

The 3rd appointment is the Post Op appointment at Tripler. We are 2.5 hours late. It is lunch hour. We were told the other 2 appointments took precedence and they would fit us in when we got there. Which they did. The resident comes in- I show him a couple spots of swelling- which are ultimately deemed "to be expected" a strange bruisish area around the area formally known as breast tissue- which probably is the direct result of ripping the adhesive apart from the first incision that is deemed "healing nicely".  I sense a bit of disappointment that I have no comical antics for this visit- but who has time? He wants to remove the stitches on my arm- I begin to panic as visions of lymphedema mid pacific dance through my head resulting in my arm splitting open like a melon. No thank you. How about half- these ones are ready. Yeah so were the ones on my backside and would we like to again revisit the world of dehiscience?  It's going to be ok. Ok- You can take 6 stitches out- but that's it.  He removes the stitches- we regale him with tales of our many relatives of the surgical calibre who are completely capable of removing stitches. We are given a suture removal kit and a prescription for antibiotics- just in case. Phil wants to know if we are cleared to fly- he is all about chain of command and clearance. He wants them to declare me able to fly. They just smile. -We were under the impression that there was very little we could do to stop Jen from making this trip- we're just trying to make it as comfortable as possible. I giggle- he is stewing. They leave. Why won't anyone declare it? Ok- I tell him- Pack our bags we are going.  I DECLARE IT. He just shakes his head.

Tuesday is more back to back appointments- one that was amusing, nerve wracking and touching all at the same time- the fake boob fitting. I called my aunt and asked her advice in the field of mammary illusion. She said just grab some tissues and shove it in a bra- she's been doing that for years- the fake things rub and are hot and heavy. I laugh. But I am lopsided- it would take a lot of tissues. So I enter the office not sure what to expect. We go over the history- the extensive cancer history that brought me here. She wants to know my expectations and is a flutter of motion between cabinets pulling out foam forms here and bras there.  Her name is Joan and I think it is not just coincidence her name is that of a saint, a good friend I lost to this disease, and an inspirational aunt. She measures me and her face lights up- This always happens- she tells me. I am prepared to hear that there is nothing she has on hand that will work for me- I will just have to wing it on the next 6 weeks shoving gauze and cottonballs down my shirt. She throws 2 bags on the table and yanks a chair over to reach a basket on top of the cabinet. She is explaining what my insurance covers and that once bras and forms are returned- she can't sell them again, even if they are unopened. It just so happens a lady returned 3 bras yesterday and they will be perfect for me. It's a simple thing, but I feel the flutter of angel wings. We spend the next 30 minutes shoving various foam boobs in and out of my bra to see which one works the best. I find it ironic that they are made of memory foam because I am pretty sure the bulk of my memory resided in my right breast and I have now lost it.  It is a simple thing, but I feel more balanced. I show my neighbor who immediately gives the fake one a tweak- we laugh- she wants some.  I think of the scene in Mrs. Doubtfire where Robin Williams sets fire to his fake set- I make a mental note to take care when I bend over hot stoves. Day 2 of crazy week down.

Wednesday is it. The kids last day of school, their awards ceremony and the day we depart for the mainland for 6 weeks. I haven't packed anything. I've made lists over and over in my mind. I sent myself notes- yet physically I am still pretty wiped and I have to rely on Phil and my neighbor to put it all together. It miraculously comes together and I have yet to bust a single stitch. We make it through the red eye flight to New York- no swelling- no arm splitting- and worst of all no sleep. But we make it. I feel triumphant.

The stitches are in itches. They are starting to bother me. This morning we unpack the suture removal kit and start removing them. We are 3 stitches down when my aunt, grandma and cousins arrive. This is how you know it's a family affair- ooh what are we doing- surgery? No, just stitches. Oh cool.  They immediately busy themselves with the children with the instructions to let them know when we are huggable. My husband usually surprises me with his various skills. I trust him completely and so it's not a surprise that he is actually better at removing stitches than the resident. It is amazing how much better my arm feels and looks without the dark green strings poking out.

My cousin is involved in a raucous game of hide and seek with the kids. I gave up this game years ago because every single time, Lily would climb into the bathtub. I would yell -where is Lily? She would giggle- I'm the bathtub.  When I stopped asking where she was, I would hear her yell- are you looking for me? Now, Lily doesn't like to be the first found, yet her hiding skills are limited due to her size. So she rats out her siblings. One time, as Bella is on the hunt- Lily is found and decides to point her sister to where the only player bigger than her is hiding. My cousin Shannon looks at Lily and laughs- we have a saying here in Philly- Snitches get Stitches.  Bella thinks this is the best catch phrase since "See ya Suckaz" and skips off singing it.  Shannon apologizes to us profusely for teaching the kids the saying. We shrug. Phil says- it's Ok- I know how to take them out.

Friday, May 18, 2012

The News Sammich

Yesterday's post op appointment was less than optimal. I got the terrible, horrible, no good, very bad drains out- which was less painful than the biopsy and a lot less disgusting than I feared. That darn biopsy is my new benchmark for pain tolerance which is a bit terrifying as I know it was relatively minor and quick. I am a wimp. I do have my shining moments though- like the one where I thought that my mastectomy scar looked like a wrinkly little grimace and wouldn't it be funny if I drew eyes on it for the big post op reveal? Phil looked at me really strange and when he was done laughing and shaking his head, he asked but what if they don't think it's funny? Oh it will be funny- and then it occurred to me- what would be even funnier- googly eyes! So yes, I did.  And that was the hi light of the day. 

The surgeon then hugged me and told me we needed safer margins on the breast. Crap. GDMFCSSOB. The good news is the margins on the invasive cancer were good- 5-6mm- they usually want a solid 2mm- he was completely shocked that I knew this number- but then again- not my first tumor rodeo. I began questioning the logic of this skin sparing procedure after all. We got less than a mm and that's not good enough unless we do radiation. I don't do radiation. So we need to go in for more- it's not a big deal- we could do it in the office, but you will be more comfortable if we do it in the OR. I'm not really sure that is the case. And I'm know for sure the rest of my day being spent in the sedation admission center was also not comfortable. Nor will showing up today at 730 to sit around and wait for 3rd case. But you do what you gotta do.

The best part was rounding the 3.5 hour mark in the SAC waiting room- and it is a sack of something up there- something gone horribly horribly wrong in the whole time and manpower management scheme. I get a call(my husband was hovering near the window trying to get a signal to call our neighbor to again pick up the kids from school since we were not going to make it in between trying to get me to calm down and not fall over) and it's The SAC. They are calling to tell me what time to report in the morning. You do know I am right down the hall still sitting in YOUR waiting room right now!? I say disgustedly to the little tech who couldn't get a blood draw from me 7 days ago. Oh? You are still waiting to see the nurse? Yes. She should know that because I just did my 6th lap past the desk no less than 5 minutes ago. Each time I smile at them- yes all of you- lab tech who can't draw blood- friendly black dude who I think is paid to just walk people back and forth between waiting rooms, several nurses who seem to hide behind the desk. Well do you want to know what time to report? she asks. Please- enlighten me. 0745. What case am I? um, well I think it's 3rd. Seriously 0745 for 3rd case. YHGTBSM. I was bumped to 3rd case last week and didn't go in until after 11. As third case- I could have spent 4 hours tomorrow waiting in the sac for you all to process my sac shit and if they could take me earlier- you could really quick ask me three times in a row what my name is and when I was born and I could tell you again that I have a chest full of rash and blisters so hell will probably freeze over before I wipe myself down with your cancer causing chlorohexidine wipes. I've got enough cancer thank you very much. Oh yeah and I'm allergic adhesive too. Even paper tape? Especially paper tape. Steri strips? Yep. Wow. Uh huh.

I have to keep faith. I have to hold firm that this is for the best and this measure will keep me safer without pumping or irradiating myself with toxic chemicals. The good news? Apparently- according to my sources- when you rip a wound open - it heals faster the second time. Good to know. Although I feel pretty sure that in 8 hours, I will feel less healed than right now- so total picture....anyone?anyone?

Wednesday, May 16, 2012

Getting a few things off my chest....

Breast cancer isn't that bad. At least that's what I tell my daughters day in and day out. I will continue to tell them that and show them, it is beatable. It is treatable, there are options. I learned that lesson when I was a teen and my aunt got breast cancer. She had surgery and then she got another breast cancer. She's still here. Her mere presence keeps me going, it's a beacon of hope. Of course she has repeatedly stated she would take it from me if she could and I know she would- you cannot physically watch someone you love go through cancer without that thought. I have now been on both sides- although I pretty much feel I'm poised on a ledge still somewhat casually observing the "survivor" side. Part of me knows my aunt is just grateful to have someone to share all the boob jokes with- or at the expense of! And that's ok too.

The absolute worst of this experience was the night before. Knowing there were not one, not two, but three tumors in my breast made me want it out. It happened so fast and the speed was terrifying, yet comforting. There was simply no time to luxuriate in the loss of a breast- it had to go, it needed to go or it was going to kill me- there was no taking part of it- total mastectomy was the best option.  When I go, it will be under my terms and my terms had not been met. The worst was trying to write out cards for each of the kids, hoping the range of motion post surgery wasn't going to be horrible and hearing this tiny little whimper. Kiera had been stuck to me like glue and finally exhaustion got the best of her, Bella went to sleep hours before with a hug, a smile and the words "I will love if even if you have cancer and I will love you without a boobie" but Lily monkey lay awake unable to find the peaceful dreams. I sat with her for minutes and we cried. I hate crying in front of people. Even those who have seen me cry more times than we can count. And this little trooper and I have had our fair share of good cries together. What are you afraid of the most? I asked her.  That you won't wake up. No 7 year old should know the risk of anesthesia is that you won't wake up and me being a pragmatist- won't make promises I can't keep- but every now and then we have to fudge and make everyone feel better.  I am going to be just fine and I am going to come home as soon as I can. While I am away- I will always be here- and i kissed her curly little head and here and I put my hand on her heart. Then I told her she was one of the strongest people I had ever met and I knew I was going to be just fine because she had cancer and she had surgeries and she was just fine. When it was all over and done, we would be the cancer buddies in the family.  She actually giggled and put her little hand on my heart.

The rest of the night was a sleepless conglomerate of trying to control the anxiety. Feeling absolutely horrid I had to take away one of my husband's favorite toys. Feeling guilty that I had not left the house, the schedule, everything better organized. Fearing the great chasm of unknown the daylight hours would bring and just wanting it over. Knowing the fear in the minds and hearts of the ones I loved and being the cause of it was relentless.  The male nurse at pre op that day assured me it was going to be easier than I feared- after all I had had four c-sections and abdominal surgeries are notoriously painful. Yet 2 appointments prior- a surgical resident (who I do enjoy and is going to be a fabulous surgeon) upon my listing c-sections as prior surgeries stated- I know I shouldn't say this but I sometimes forget to consider those as real surgeries.  My quip- well hopefully all four humans that were surgically removed from my body will be significantly larger than any tumor you find.

Really the pre surgery fest of appointments is to mentally and physically wear you down so you have no other option than to let them use you as a cutting board. The day of surgery is more of the same. I was booted to 2nd case so they could inject radioactive tracer into my breast(my husband said I overused the term tatas- so we'll get all clinical- hang on til I start calling it the mammary). Those of you who know me and my breasts, know that radiation is not our favorite playmate. We realize radiation is all around us and we get all control freaky where we can. Injecting radiation of any sort is generally frowned upon in our circles. Even worse is waiting for injection of radiation for hours. It tends to f#@! with your mind a bit- despite the very perky and ever understanding oncology nurse who is waiting with you(probably because I'm flagged as a known flight risk) and the husband saying- they're gonna cut it all out in an hour anyway.  So four little "b-stings" as in boobie stings later- my husband and I watch the screen to see where the tracer goes. He is dying to push buttons yet settles for discussing what my new powers will be after being bit by a radioactive 'b".  The tracer finally shows them what they need to see- which lymph nodes drain from the mammary mound of mine - hence forth limiting the number of lymph nodes that have to be removed. All and all that's good, I guess. For this exam I have a combo 2 gown crazy outfit going on and people keep asking me if I want to change. I am going to an operating room where they will make me naked right?  Yep- So kinda wondering why I want to spend extra time changing right now. Good point.

3 hours later after whooping my husband in 2 of my least competitive games of scrabble ever and not one solid opportunity to play boob, which seemed to hang out with the other tiles, just taunting me- we are hoping we even get seen today. After watching someone else's escort eat the never ending bag of cheetos jammed in her purse and then complain about how cold it was in there. After watching everyone else come and go- it was our turn. I was ready. The surg nurse pointed out I put my gown on backwards. I smiled. I put my gown on the way they told me to in nuke med, I figured I was going to be naked for the big act- so I wasn't concerned with it- would THEY like me to turn it around? Yes. Okey dokey. Not sure why everyone seemed so amazed at the speed in which I can turn a hospital gown around- seriously? I even went into the darn bathroom- that took the most time.Hopefully all the really good people are the ones with the meds and the scalpels. jeesh. 

SO the surgery was long. I remember feeling crazy nauseous and letting them know- that apparently bought me some extra quality time in recovery- but sure beats puking after having half your chest and arm removed. I also don't know why docs bother to talk to you for a very long time after surgery.  Between the little green goblins hopping around and some really not clear dreams and memories- I had no idea which way was up. I didn't hurt, which surprised me. I remember people kept telling me to breathe. That seemed silly- why do they have to tell me to breathe? Apparently I needed the reminder. I finally managed to open my eyes. The bandage on my arm was monstrous- I hoped that hadn't gone really south so I started squeezing my hand. Couldn't be too bad- it still worked. Maybe that was residual nerve juice- best to keep trying- still worked. Each finger? yep those work.  nice. My chest was wrapped in an ace bandage- but definitely one side was not as lush as the other- but so far- not too terrible.  All I kept thinking is that I wanted to see Phil. Basically I could look at him and know where we were at. It seemed liked I was the only person left in recovery and when I asked what time it was the nurse said 8. I had lost 8 hours. Something must have gone wrong- that was much too long. SO I asked if everything was ok, no docs were hovering- which is usually a good sign. Yep, since you were nauseous we had to wait a little longer- now we just have to wait for a room upstairs.  As much as I tried, it was tough to wake up and part of me said- it's 8- time for bed go with it. I went.

I remember vague murmurs about clean nodes and a lot of silly questions. Basically anyone who asks questions from a heavily sedated person is suspect as reliable. I got asked a lot about pain. I was surprised that my arm hurt a lot more than my chest. I was relieved to see Phil and it hit me- not only did I miss Phillip's band concert- he did too. Then my chest hurt.

I was surprised that it didn't really hurt to switch beds- that simple act post c-section is torture. I couldn't help squeezing my hand- it became a subconscious tic. I tested my shoulder- it was definitely tender in my armpit- but I could move pretty well. All in all, the systems test seemed to be going well. I knew that there were only minutes before they were going to kick Phil out. It seemed unfair. I remember trying to make my case for how unfair it was since we just got there- don't they understand how awesome he is- he does their job for them? Yet I'm pretty sure the morphine stopped the brain mouth connection. Might have to use that to my advantage down the road. I remember him assuring me he would be right back and putting the pain button in my hand and the next thing I knew- it was morning.

Saturday, May 12, 2012


This is Phil posting on Jen's Blog: I wanted to let everybody know that Jen's surgeries were successful and she is recovering at Tripler.  We hope to bring her home Saturday evening or Sunday (just in time for Mother's Day)!  I am in absolute awe at the courage and strength that Jen displayed today.  The surgeries took about 4.5 hours and the Doctors tell us that the margins on the chest and the arm are excellent. The preliminary report on the sentinel node biopsy is negative- it'll be a week or so before we know the official results along with the complete pathology of the breast carcinoma.  For the arm sarcoma, we'll have a great shark bite story at the ready... I'm not sure when she'll be able to blog again since the healing/recovering process will take some time. We thank everyone from the bottom of our hearts for their prayers/thoughts/positive energy. 

Thursday, May 10, 2012

I can't think of anything worse than losing a child, except perhaps seeing them suffer. So today was one of the longest days for many reasons. The longer it was, the longer I could avoid calling my own mother to let her know the news.

I have breast cancer. And a sarcoma- but that last bit seems pretty minor now.

Equally difficult was sharing the news with my children.  The last thing I ever want is for anyone to worry about me- least of all these little people in my charge. So for them I find strength and courage because there is no other option.

I find strength in knowing there is a 7 year old upstairs who is stronger than I will ever be. I find courage to be strong for the 11 year old whose worst nightmare is to be unpretty or different- if for nothing more than to emphasize the truth of beauty and strength for her to know and find within herself. I find a smile from a 6 year old who knows something really bad is going on and forges ahead reading a book to me despite 5 other people vying for my attention because she needs me to see her read.  And for the 12 year old- who will be strong, yet terrified and rise to the occasion because I know he will, after all he is his mama's boy.

There will be long days ahead and we have not had time to prepare. Prepare for the physical or emotional loss.  But I know preparation is a luxury this disease will not be afforded, time is of the essence and the eviction notice has been given.  I will face it with my best friend, by my side as he has been from the beginning. In sickness and in health- he has been my rock, my foundation and together we can get through anything. I have been luckier than most and the universe tries to find balance- it will again tip in our favor. Until then, please offer a thought of strength, a prayer, any positive energy you can spare for my monkeys and their dad tomorrow- as I will be temporarily unavailable.  Hugs.

Wednesday, May 9, 2012

Saving the Ta-Tas....

Do you really want to save something that's trying to kill you?  My husband and I have been wrestling with this decision for a few weeks. Well mostly I have been wrestling emotionally and well- you know how boys are with toys- especially when you threaten to take them away. They go out of their way to play with them to show you how valued they are. Yet that fact was never ever in doubt. If sheer love and affection could stave away cancer- my ta-tas would not only be safe- they would probably emit a cancer fighting aura. Yet that is not the reality.

The reality has been palpable for months. Mostly by me- obsessively with the express desire and hope the little lump that liked to become sensitive once a month would just fade away with the PMS. But it did not. When I could no longer ignore the lump in my arm, it was time to take action. Tomorrow we will know for sure. There are definite lumps, but tomorrow the pathology will let us know how evil those little lumps are.

It is a battle. I know damned well that early detection is key to survival. There are pink ribbons all over the world declaring that continuously. I get that. I feel also that breast cancer treatments , though lightyears better than even a decade ago- are.still. barbaric. Most cancer treatments are. You can give them the advanced feel with super advanced photon something no one can pronounce name- but my gut still is telling me- they aren't the answer. The problem is they are the only solutions right now. Or are they?

And I can once again attest that you honestly don't understand something until you experience it. So far this experience has pretty much sucked the big one and I haven't even gotten to the really ugly parts yet. I don't know how many times I have to say it- I don't really have to know everything- I'm ok with that.  It makes me feel no better whatsoever to know that hundreds of thousands of women have been through this and many more will join the journey before it gets easier or somehow goes away. 

Perhaps it's the enlightenment of my husband declaring- Holy cow! as he witnesses the extreme compression of my mammogram that drives home how there has got to be a better way. Or perhaps the extreme burning of the core biopsies in areas that apparently didn't take up the lidocaine . Or the repeated assault of the mammogram POST core biopsies that didn't take the lidocaine that make me doubt this whole process. Seeing the bright little lumps light up on the big fancy screen were some how simultaneously comforting(Thank God the whole darn thing isn't lighting up) and horrifying(Oh that's gonna be a big chunk of ta-ta that has to come out). As the biopsy , partially medicated proves- I am a wimp when it comes to pain. Coming home and looking at post lumpectomy pictures- probably not a good plan either. Then I go back to trying to be positive- they can be replaced- I cannot be. And my grandmother's words keep lurking in the back of my mind- it could be worse.  Part of the problem is knowing that the worst is no where near from over. And as my uncle told me in his infinite wisdom and many years spent past the dead zone- when it gets really bad- just think that somewhere right now someone is to the point of tears because they have a flat tire, or a zit or their eggs were over medium instead of over hard and it is what we make of it. But then again, he pointed out it also reminds us that most people don't have a clue. Some days it seems it would be a little easier not having one.

Tuesday, May 8, 2012

Just Keep Swimming...

A couple months ago, a new rec center opened here on the island. The KROC Center- is a state of the art worship, pray, play, exercise, fun kind of place. The fees are affordable, especially for a family and I don't have to spend hours afterwards cleaning sand out of everywhere. It is a great opportunity to watch people, while the kids can splash around with Lifeguards at every turn.

I just can't believe some people. They go to the pool and drop their kids off and go work out or don't even pay attention. I can't tell you how many times I see the lifeguard grab a kid and take them over to their parents because they repeatedly don't follow the rules. 

We started going to the Kroc center every Wednesday(short day of school) and most weekends. The kids have come to rely on it as part of our schedule- but it is also a great incentive to get them to clean their rooms and do their homework quickly. This Wednesday was even shorter due to the May Day Program and I had the girls' suits packed and ready to go in the car.

So this woman isn't even through the doorher kids are off down the hall and she doesn't even go into the locker room to supervise. She is on her darn cell phone. 

It poured after the program, I was so grateful the clouds held off like they did. I was waiting for my rainbow- I needed one that day. I didn't see one, but I packed the girls- already slightly damp into the car-they were going to get wet anyhow. I just hope the rain moves past by the time we get there. It looks like it will. I have to keep positive. I hear my phone buzzing away in my bag. I have put a new ringer on for all calls from the hospital, it's called sci-fi. It's like spooky whistling you hear on all the shows when they talk about alien abductions. It makes me laugh because I know most calls from the hospital are not good.

The kids come running out of the locker room and just throw their clothes on a chair. The mom shoves them into a bag- the whole time on her phone. The lifeguards aren't babysitters. 

I check the messages while the girls are in the locker room changing. I don't know if the signal is in there or not. We head to the chairs and I find one that has a decent view of all areas of the pools so I can try to keep tabs on the girls. I have a call I have to make for Li Fraumeni Syndrome Association, we have our Board Meeting coming up and I need to make sure some details are taken care of.   But that will have to wait- the message is from my Genetic counselor. She has been trying to fix the recent comedy of errors that is what the hospital refers to as "business".  Last night I got a call from the surgical oncology nurse. They moved my surgery date to the 18th of May to take into account the potential need to deal with another tumor that popped up on the MRI.  After reasonable pleading and making a case for common sense that it should not take 2 weeks to perform the necessary imaging and biopsying of said new tumor if it was that urgent and that my plans to travel on the 23rd were not flexible and 5 days was not enough time to heal from surgery when traveling with 4 kids. But Jennifer- this may be cancer and it could be very serious.   As am I when I say- that is not enough time and if it IS serious- this all needs to move faster anyhow. It did not matter. An entire weeks worth of appointments were wiped out and rescheduled without my approval. Tests were ordered that I had already refused based on radiation exposure.  I was a mess. My husband was again gone - the first bad omen. The other being the Mallory family attempting any sort of trip. We used to laugh at the show LOST and how the island didn't want them to leave, yet seemed to be trying to kill them at the same time. I was beginning to relate.

Look at her, doesn't even put her cell phone down for 2 seconds. Probably chatting to friends while her kids are right there in front of her. The littlest one can't even swim. Engage.

I walk over to the side of the pool. Bella and I had been working on her swimming technique before I had my 1st surgery. I should be able to be back in the water by now, except the minor wound- the one that isn't cancer and doesn't have to be completely cut out anyhow- dehisced. A fancy word for came wide open and now has to heal from the inside out. Which means, no pool, no baths, no long luxurious hot showers until the little eye on my backside completely heals. So now I am relegated to the sidelines, miming the various swim skills I would like her to practice. Kiera, like always is happy to help show her some moves.  I am grateful for that as the phone is ringing yet again. It's my genetic counselor, she has fixed the schedule and it makes for a really busy week- again being at Tripler almost every day- but I need to make this happen. I walk back to the table where my latest notebook is to write down whatever we discuss. I learned long ago- if I don't write it down- I won't remember.  

Thought for a second she would engage, nope back to whatever is more important than her kids. I wish people would realize they are missing out on what's right in front of them. 

I debate whether or not I want to ask the hard hitting question. After all, I am in a public place with my kids and now is not the time to hear things I can't unhear. Which means it's out of my mouth before I can stop it- I want to know exactly what the radiologist said, I want to know exactly what everyone is thinking. I don't want decisions made for me, this is my call. I am a part of the team and I need the information to decide what we are going to do.    Ok, the report is Bi-rads 5. There are two lesions, one is nodular, one looks like it is in the duct.  Most radiologists read that as highly suspicious, about a 50% chance of malignancy. Our radiologist reads it as probably malignant.  We need to do a biopsy to know for sure. We can do a fine needle aspiration, but that won't give us as much information as a core biopsy with nodes. Why can't we do an old fashioned surgical biopsy when we are doing surgery on Friday? You know wide margins- unlike the arm thing. It will take weeks for the path to come back anyways. It probably is better to know IF we are dealing with a malignancy before we go into surgery.  That is a good point, although we can probably guess  it is. Well we can know how big of margins to take, you never know it could be a cyst. The surgeon has already been briefed and is ready to do the lumpectomy.  Ok, let's do the core. I'll schedule it, probably Tuesday or Wednesday next week, I will send you a message with all of the appointment times. Thank you for fighting for me. No, you have a pretty good handle on this. I'll be in touch. I look down at the screen. I don't feel like I have a good handle on this. I don't want to handle this at all. I want to jump into the pool and swim with my girls like nothing is wrong and there isn't a gigantic timer that has just been placed above my head. I know everyone has one, but I don't want it to be so BIG right now and so LOUD. I call my mother in law. She knows the pathologist and chief of surgery at the hospital. It's time to hedge my bets. I need all the help I can get at this point. I wipe away the tears. There is not time for feeling. Yet the fear, the anger all of it keeps trying to seep out of my eyes. Big old betrayers.

Oh god, is she crying? What the hell? Is a day at the pool too taxing for her? Seriously- you don't get any easier than this. 

The clouds are moving back in. The girls are cold and hungry. My phone rings again. Go get changed and we'll go to lunch- I answer the phone and move everything under the umbrella. It's a friend with LFS, I sent her a message that I needed her expertise on saving the tatas. She is up to her eyeballs in trying to find the best treatment for her son and a new rare condition, but I trust her and I know she will call if she can. She is an information hound and she is real. She has been through 2 breast cancers and treatments with LFS so she knows what there is to know. Is this your 1st cancer? Yeah- I didn't want to tell the LFSers because the first one was just a sarcoma.  Wait, you have a sarcoma too? Where? Is it one of those fibrohistio things? You are holding it together much too well for your first cancer. I was a complete wreck. I don't feel like I am holding together. I literally feel the seams snapping string by string. I do know that this feels much more manageable than when they told me Lily had cancer.  I feel 1000% better talking to her. She says she agrees with getting the lumps out- but taking the trip is what I need, do it. She also points out how long it has taken her to progress with her son- we know the routine. No one wants to listen to you when you say something is wrong- then when they decide it's urgent you still have to hurry up and wait until you are on their schedule. The kids are changed and just waiting, we gather up our stuff as we move to the door, the phone rings again. All three sag and moan- not again. Although I need to return that call, I also need to spend time with my girls. This is the balance- a new balance that I have managed before and will get through again. Managing cancer with living. Certain things will have to give and certain things I will have to let go. I have to let go of how I feel other people see me, after all they don't know where I am coming from and things aren't always what they seem.  But I do know- sometimes you have got to just keep swimming, well at least when the incisions heal you can!

Tuesday, May 1, 2012

I'm with the M...R....I

I've never been a big fan of horror movies. I guess there are enough things in day to day life that scare me, I don't need the extra horror. Today's big challenge is to get through the first MRI without a panic attack. I'll deal with the next two MRIs as they come- which no one really knows because of the way "the system" is set up.

Up today is the breast MRI. It has not been easy to get here. Months ago, during my annual exam- my doc put in the order for breast mri to avoid irradiating my already radiosensitive tatas. It was promptly denied. I guess that they are only performing these for active duty women on site and Tricare doesn't want to pay for me to go off site. The denial actually said they wouldn't pay for it unless I could show that I am high risk breast cancer. That I can do- with the genetic test for a cancer predisposition syndrome that they paid to have done. A syndrome that makes one sensitive to radiation.

Tricare- Oh, Ok, let me look in my file- Oh it says here it's already been approved.
So why did I just get a letter of denial?
 It must have been sent out before .
Before what? Before anyone read the request? Or my file? That seems inefficient.

So I call to schedule the mri.
We can't do that here.
Oh here we go again.

I call my genetic counselor.
We are working on that. We don't want to send you to town because things, well, you know.
Get lost? Aren't done in house? Don't transfer? Cost more? Yeah I know.

I don't know why patients are non compliant- this seems like a perfectly reasonable way to spend my time.

Fast forward 2 months. Still no Mris ordered/approved.
I am sitting with the surgical oncologist who would like to see what else is brewing in my arm, and lungs- since that's where these little buggers like to go. He orders 2 more Mris. He throws another breast Mri in there for good measure. Wait 24 hours and call- they receive the order, it has to be approved by the radiologist then you can schedule. I know the drill- we do this every 3 months with Lily monkey. They are actually much more efficient with the kids- of which I am glad for. The Genetic counselor and oncology nurse go to physically speak with the radiologist to let him know about Li Fraumeni syndrome and why these tests are being ordered.

I wait a day and call. The order says arm mri, the lung mri was cancelled as was the breast. Seriously?

I call the Genetic Counselor.
Well that was not very nice. She says.
I was thinking- GDMFCSSOB.

It's hard enough because I don't want to do these scans. I am grateful to be able to be proactive with my care and try to "catch" cancer at the earliest and most treatable stages. But at some point you are just beating your head against the wall. This is not in line with my quality of life goals. Spending time fighting over scans I don't want to do because the mere thought of causes waves of nauseous anxiety.

Days pass. While I am in the waiting room, waiting to be seen by my PCM- who needs to look at my 2nd-indelicate incision which has decided to come undone and after 8 calls to 3 different numbers- surgery clinic has no one available to tend to it's inconvenient dehiscience on a Friday afternoon. I learned new words that week. Dehiscience usually is a concern for abdominal wounds because of the risk for evisceration. Not pretty. Although I wouldn't mind part of my arse falling out- it would then be lopsided and that's just no good. But I digress- I get a call from radiology. They want to schedule my breast and arm mris and chest CT.

I am not doing a chest CT.
It says here that a lung mri was ordered, but the radiologist wants a chest CT.
I am sensitive to radiation is why the lung Mri was ordered. I am not doing the chest CT.
Well another guy will have to schedule that, I can only schedule the mris. How about Tuesday and Friday?
I can't do Friday- It's my kids' May Day Program. Why 2 days?
That's how they ordered it? How about Thursday?
The radiologist.
It seems to make more sense to do it all at once- especially since I am clausterphobic and have to take meds for the procedure.
Oh you are clausterphobic? That's why they ordered it for two days. Make sure you have someone drive you- the meds they give you make you pretty woozy.
It would be less daunting for me just to get them over with.
That would be a long time to be in the machine, especially if you are clausterphobic. 
Thursdays Fine just schedule them. My husband is out of town and I have 4 kids- I'm sure finding a driver won't be an issue- for 2 days.
 Oh you need to do an xray too on your arm.
Yeah- if you could do that as soon as possible, that would be great.
How about if I do it after my MRI on Tuesday.
Oh that makes sense.
That's why I get paid the big bucks.
What do you do?
I schedule mris- it's a full time job.

So I get a call yesterday. The lung MRI has finally be approved. Same scheduler.
SO I would like to schedule your lung mri.
Ok, what days you got?
I can do Tuesday.
(The irony not lost on me...) OK let's do tuesday.
Oh wait you have an MRI on Tuesday. You can't do Friday because of your kids' May Day program Right?
Right(creepy- you remember I have May Day, but not an MRI that day.)
How about Wednesday?
So I would need a driver, for 3 days- of which I would be taking an addictive sedative- for 3 days and that is more convenient that just doing it all at once?
Let me ask. Pause. I can't get a hold of anyone I'll have to call you back.

Oh I'll be waiting.  My plan is just to be surprised this morning when I go in- the magical multiplying MRI game- maybe we can turn 1 into many.

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)