Fakey Fakey

I love my husband more than I ever thought possible. This says a lot since I grew up romanticizing life, marriage, and the happily ever after- my dream was to marry Superman. I got something better.   The key to a happy marriage is throwing all those expectations out the window and loving what you have. I'm not saying give up the dream or trying to make things better- I'm just saying you will make life a lot easier if you appreciate what it is instead of holding on to what is coulda shoulda woulda been.

The past 6 months have been really, really, really, really tough. Really tough. The toughest parts were not having a gigantic chunk out of my arm or a breast removed- the toughest part is watching what it does to my family. There are people everywhere who have cancer. Before you have cancer- you say- I've seen what cancer does- it's a monster. When someone you love gets cancer- you get angry and think about kicking butt and taking names. When you get cancer- you just want it out and realize- no one gets it unless they have been there but mostly it's agonizing to watch your illness affect the ones you love. So you take a family like mine- who has literally faced cancer for decades and you have a tough time relating to "normals". There is an ebb and flow. There are the calm years where it is easier to pretend that the normal BS doesn't bother you and that you give a shit- and then there are the ever present cancer years where you want to tell people to stick a sock in it- no your 80 year old grandmother having cancer does NOT give you insight into how this whole thing is.

I watch people. Not in the creepy- I will fiiiiind you kind of way- but when I am out- I notice people, their mannerisms- I read body language. I pay attention. I have noticed that since I had a mastectomy- people look at my boobs. Before my mastectomy- guys looked at my boobs. In my mind plays the thoughts they are having- well it couldn't be too bad- she still looks like she has a boob, I wonder which one? Well it's foam. It's hot, it's annoying and it's for everyone else's comfort- not mine. When I am home- I don't wear it when I want to be comfortable. When I work out- I wear a lightweight one to protect the area. It's sensitive- not in a painful all the time way- but like when you have a fingernail that gets broken and the skin under it gets exposed and it feels really strange and vulnerable. The other problem is balance.  One side is weighted different now and I have already noticed some back and shoulder pains. I saw an amazing lady in downtown Honolulu who was an oncology nurse for years and now she takes care of mastectomy prostheses. She is good. She gave me some comfy cotton coverlet bras after the surgery and the foamy boobs and a bra with a special mastectomy pocket to stuff the foamy in. She said we had to wait until I was healed to add some weighted prostetics.

This summer, while I was travelling in Denver- I felt better and wanted to start walking and working out. I found that Nordstroms had mastectomy supplies. The salesgirl was really nice, albeit like 12 years old and found me a sports bra that worked. I looked at the other mastectomy bras and they were ugly or impractical or lacy- which I don't do. I have enough things rubbing me the wrong way- I don't need lace.  Over the past four months- I have taken to washing my bras in the bathroom sink every couple of days. It gets old. On humid nights- sometimes it doesn't dry fast.

We took the kids to the mall the other weekend and we parked by Nordstroms in Honolulu. Phil asks me if I want to look at bras- I say sure- it wouldn't hurt to have another sportsbra- maybe they have better bras here. As soon as I get to lingerie- a saleslady asks if she can help me find anything. I ask if she has Amoena bras(that's THE mastectomy bra to have)  and she looks at my boobs. I admit- I'm a little touchy and it's technically her job to do it- but come on. She takes me to the very furthest mastectomy fitting room and tells me how lucky I am that she is on today- she is certified in mastectomy fittings. I tell her I just want to look at the bras- I already have a sportsbra and would like another one. She decides she needs to fit me- all the while telling me her aunty is a survivor.  She goes to get try on bras and I know I don't like any of them and tell her so- she says it's just to get my size. You and I both know that depending on the make, model, manufacture- bras run different. Pants run different- shirts run different. She is on my nerves. I pull the foamy out of my bra and she recoils. What is that? Why are you not wearing a silicone form?  Well I told her I had to leave town right after my surgery and hadn't gotten a new form yet since I hadn't been back to the doctor. She said she wouldn't fit me without a decent form, I was far too cute to be wearing that. Gag. Wow thanks for making me feel even better about this shitty situation. Strike 2. She grabs 3 different size forms and comes back and we try them on. They are not the right size. They are out of the right size but she is going on and on about how wonderful they are and how she has no boobs and a client once offered to buy her a set because they were so fabulous. Are you flipping kidding me?  SO I say great- whatever- Can I get a sportsbra? She says they are expensive and she doesn't want to sell it to me without a proper form and a prescription if we can bill insurance. Are you kidding me- I got one in Denver? Long story short- an hour of my time wasted and no bra. I called my prosthesis lady the next day and made an appointment. Went in- she gushed that I lost weight- got me a bra and a sportsbra and a silicone form and I was on my way in 30 minutes, zero cost. Lesson learned.

Last night when we were watching monday night football, I take out the new prosthesis and toss it to Phil. It's heavy. He makes a funny comment. But how are you going to play a pick up game of cornhole?  See one of my original foamy boobs had silicone beads inside for weight, much like a boob shaped bean bag. There may have been an evening or two that I got tired of wearing it and took it out and tossed it at him. It became a joke- oh are we gonna play cornhole now? That's how we roll...

We have had the reconstruction talk. Specifically last week at my surgical oncology follow up. The surgeon was pleased with how scrunchy face former boob area looks- I said that's good- I would be really freaked out if you came in here and gasped at how awful a job you did.  Yeah- I keep it real. So he starts smooshing the skin around and says- this would be really easy to reconstruct- there is plenty of skin here. Said the surgeon. Phil says- I think we're good.  The surgeon looks at him- really? I say- well let's just wait and talk about it when the other one goes bad. New resident is not sure what to make of me- although he's on notice because I had to correct him and let him know I had Li Fraumeni and not BRCA so I wasn't technically at an increased risk for ovarian cancer.  But I digress. He then looks at my arm and starts smooshing it all around- you know the plastics guys could probably revise this. Phil- Really- we're good. For a surgeon's son- he is having some quality aversion to me having surgery- I have to say I rather appreciate it.

I love that he loves me for me. I know what that feels like because I love him the same way. It breaks my heart that he is so worried about me.  He felt compelled to point out later that if implants would make me feel better, he would support me but he loves me and has never been a fan of anything fake. That means the world to me. It means even more because he is genuine and sincere.  That and I know how much he enjoys the tatas, or in our case now- the ta. In this day and age of fake tatas every which way- it's refreshing. Mostly I feel that life is too short to waste feeling icky and recovering when you don't need to. I'm all about efficiency. I'm sure with time my feelings may change- I hope they do. Until then I appreciate what I have and let the rest go.

Breast Cancer Prevention- Think before you Pink

October is upon us. I am excited for fall. I may or may not have already indulged in a pumpkin spice latte. I can't wait for pumpkins and spices and pink yogurt and pink cookies and pink ribbons everywhere and football players in pink- what? Ick. Oh yeah- October is Breast Cancer Awareness Month. Alright lady friends- There is this thing called cancer and it can grow in your breast. I know?! Crazy right?  It can happen. It happened to me. SO  feel your ta-tas. Know your body. If something feels wrong- get it checked out. Avoid radiation if you can to do that. Guy friends- don't think you are exempt. Feel your man parts- and your tatas too. Like I need to say that- but focus on things that feel different and then go back to business as usual. Whatever that means for you...


 When did Breast Cancer Awareness go sooo sooo wrong. How does dyeing everything think pink help the cause? If you look at awareness being the whole goal- what is being accomplished? When people see pink ribbons- they think of breast cancer. Ok- good- it's a start- that is awareness. But then what> Ooooh it's attached to a product that if I buy- proceeds will go to breast cancer research- that seems like a good deal. Except it's not. The amount actually donated is negligible in many cases and in most cases the company has already made a donation- so your purchase has no bearing on that. Does it make you feel better about your purchase- maybe- does the company make money- yes- does breast cancer research benefit- ever so slightly. DO your research.

I was sick of breast cancer awareness ribbons before I got breast cancer. Now they makes me nauseous and I'm not even on chemo. I've worked with non profits. They are not all created equal. Some pour their funds into valuable research efforts that otherwise would get no funding- other nonprofits build multibillion dollar brands and pay mostly overhead with donations. I do not agree with the spend money to make money philosophy where non profits are concerned. Some of the best nonprofits , ones that affect the most change- are these little grassroots efforts that are true to their cause. Know before you buy. If you really are dedicated to a cause- make a donation to that cause directly- not a business selling something that implies they support that cause. The idea of ribbons was good, in the beginning. It cost next to nothing to show support for a cause. Now everyone has a ribbon and a cause. I was handed a pink ribbon pin as I sat in the oncologist's office right after I heard that I had 3 lesions in my breast. After I had multiple punch biopsies ripped from said tumors- I got a take away pink ribbon gift bag with pink ice packs and more pink ribbons and pink- how to take care of your breast which may or may not be removed entirely depending on the results of this procedure- sheet.  None of it helped me feel better about any of it. None of the organizations or research papers I consulted to try and figure out what the best treatment option- if any - is represented or benefits from goods sold by companies that throw a pink ribbon on them. Pink dye on white gum for breast cancer awareness- are you kidding me?

As a breast cancer survivor- I know that I am "lucky" to have such a prevalent "treatable" cancer. Over 1.6 million people are diagnosed with cancer every year(cancer.org). And these numbers don't include Carcinoma in situ(one of my tumors), only the cancers reported to registries and NO skin cancers. 1500 people die a day from cancer.  I know that billions of dollars of research has gone into finding treatments that work.  I also have researched the subject enough to know scientists are only now learning why these treatments work for some people and not others. With this new information- it will be at least another 5-10 years before there is enough data to support new treatments and whether or not they are effective. Depending on their stage at diagnosis- many breast cancer survivors will not live to see it. The National Cancer Institute was allotted $5,196,136,000 for cancer research in 2012. 5 Billion dollars. $51.7 million at least went into researching causes of cancer. $34.8 million was awarded to research effective and efficient therapies for cancer treatment. $3 million of that went to researching prevention.  This is divided among all cancers. Well- which ever ones have the folks that write the best grant proposals. Which they are generally paid to do or hire out. So again- you need to spend money to get money. There is a definite need to fund valuable research projects. Research projects that aren't funded by politics. This is where the non profits come in. Not all donations are created equal. When I chose to support Alex's Lemonade Stand- it is because I researched their foundation and saw how much funding went directly towards valuable research. Organizations like Susan G. Komen started out noble but soon lost the focus- money was spent on litigation and copyright infringements of their brand- money that was touted to go towards breast cancer research.

As the lucky recipient of a treatable cancer- I also wonder why more isn't being done for prevention. Cancer has become an epidemic. Children are getting more and more cancers. That is problematic. There is not one cause. It is preventable. Although I do suppose that prevention isn't nearly as lucrative as awareness and treatment. Children should not get cancer. Women in their 30's who don't smoke and are relatively healthy should not get breast cancer. I can blame genetics- but my gene didn't just mutate- something causes the damage. I would love to be able to help my kids avoid that.SO for now- I support awareness. I support prevention and I support the millions of women and men and families who face this disease together. All cancer is life changing. I would like to see less ribbons for a whole host of reasons.

www.thinkbeforeyoupink.org     



http://obf.cancer.gov/financial/attachments/2012cj.pdf

Bad Words on the Brain

We were up early Monday morning to brave the rush hour traffic to get Lily to her latest round of MRIs and CT scans. The calendar had been marked for almost a month and Lily countered her nerves by asking question after question. Will we have to leave while it's still dark-yes. Will it still be night-no. Then why is it dark- because the sun will just be waking up. How long will it take to get there- an hour. Will there be traffic- probably.  How many times will they poke me- once. How long will I be asleep- a couple of hours. Can we get noodles after- of course. Ok-Ok.

We get out the door and I turn the radio on to the beautiful news that there are 2 stalls and rain. Hopefully we will make it in time. Almost an hour later- we are still 20 minutes out. Mom. Yes Lil? It's 6:29. I know. The calendar said 6:30, we need to be there at 6:30. I know. It's 6:30, we are not there. It's going to be Ok Lil. They always allow a little extra time. But I call to let them know we are running late- just to be nice.

So I am having an MRI and a scan? Yes a CT is of your chest- because your lungs move when you breathe- the CT uses extra energy to take pictures of your lungs faster. The MRI is of your brain and organs and everything else.

So they can see my brain in the MRI?  yep.
Can they see bad words in my brain on the MRI?  me laughing hysterically.
It's not funny. Actually it is, and no, they can't see bad words when you think them.
But I can see the words in my brain- why can't they see them? The MRIs aren't that good.
Oh.

We finally find our way up to the sedation center and go through the routine paperwork while the nurse slathers on numbing cream in 3 different spots. Although Lily's port helped a lot during chemo, we haven't had a problem with blood draws for years- that is until last month. The oncology nurse whiffed it and after 30 minutes of looking for another vein- I just asked to go to the lab. I had a feeling today was going to be about the same. The nurse- who was our nurse a couple of scans ago and had trouble drawing blood from Lily was on- great. He tried twice to get her IV in- nothing. Ugh. And why doesn't she like the gas? He asks. Well- I don't know- she said she doesn't like the small and it makes her scared- but it must be pretty bad if she chooses to be stuck over doing it. ALlrightythen. He has the anesthesiologist take a look- telling me- if he has trouble- she's a tough stick. I file that away under the nurse who once told me never to let a doc do a blood draw- they are horrible. I'm hoping the anesthesiology part of his doctoring included extra practice with IV's. They have exhausted the numb spots- so he injects her with novocaine. At this point I mention- you know- when she first got her port out- they used to just dart her. Really? That's an idea. So he tries, nothing- at this point my monkey pin cushion is starting to come unglued- she has not shed a tear to this point- but the facade is cracking. I give the anesthesiologist the look- Ok dart it is- you know it hurts a bit right? Yes- but after being stuck four times- we are kind of just being cruel at this point. The telltale sign- when he asks her if she wants to try the gas- she still shakes her little curls as a tear slides out one eye. I would let them stick me all day over this. It sucks. He brings the dart back and talks about numbing the area with a novocaine shot- JUST DO IT I growl- at which point he sticks her and she screams and I hold her and want to smack everyone's heads together.  In a minute she relaxes looks up at me confused and then breaks into a wide grin. Better now? She nods. That hurt huh? Yeah.  We get her down to radiology and I whisper- you can think all the bad words you want. Love you monkey.

The MRI was as long as predicted, which always makes me feel better. Anything longer always means something's up. Always. When she's done with CT- she starts to wake up. She looks at me and smiles. How are you?  You have 3 eyes she tells me. Hmmm, I pull back thinking I'm a little close- Now you have 4 eyes, Can I go home now? No not until I have only 2 eyes. DId they do the MRI? Yep you did great. Oh Ok, is the MRI done? Yep, you did great, I repeat to the goofy kid- but I'll take this over the screaming. 

A pediatric oncologist walks into the center- my heart stops. She smiles and goes to another family. Phew. No news is good news. I look back to Lily. Did they do the MRI she asks- oh goodness. Yes- did you think any bad words? Yeah- I thought the B-word. Did they see it? Nope. Oh Good, because I thought it alot. Me too kiddo, me too.

Fighting

This post has been brewing for months. I left May 24th thinking I would chronicle my whirlwind mainland tour and it became evident after a couple weeks that was not in the plan. But as I learn over and over- plans can and do change. I spent 8 weeks- much of which was in a minivan with 4 kids visiting as much as I could. My mother always tells me I need to take the time to take care of me and do things for me. That was what the summer was about. It was part reunion, part history lesson and always worth it and exactly what I needed.  

I've been through dozens of diagnoses of cancer. It's horrible. I can now say it is far more horrible when it's someone you love than when it's yourself.  Hands down, my worst fear is not being here to help my family through the rough times and it is that fear which keeps me fighting. Within days of being diagnosed I had calls with offers to help and polite recommendations to add more spaces on the calendar so more people could help. And the only thing I wanted to do was leave. I am a firm supporter of letting people deal in their own way. I know you honestly never know how you will choose to deal with a pile of goo until it lands in your lap. It doesn't even matter how many piles of goo you've had in your lap- each one has it's own special brand of gooiness. I know people mean well, but the fact is I make a horrible patient. I do not like people taking care of me. I will tolerate it when there is no other choice.  The best option was to continue on with plans. After all- where better to be than with friends and family who had faced all the previous bouts and diagnoses with me? It made sense. Deep down I also knew that by the time I returned, the help would dwindle and people would have moved on. Also something I needed.


In my family, cancer diagnosis doesn't make you special- it makes you part of the club. You get included in tumor comparisons and debates. I am now the reigning champion for most tumors at one time although there was great debate over the blood tumors and metastases and if each cell should be counted or if it counts by organ or by tumor. By that argument I had only 2 tumors- when there were technically 4- and I think I got the sympathy ruling as the newbie. Regardless- I was still a long shot for total tumors and that's a title I'd rather avoid- although the ultimate winner is the one who stays around the longest- so you do what you gotta do- that is a title I will be fighting for.


Before I left, I spoke with the oncologist who was recommending treatment. The standard of care for breast cancer is tumor removal and radiation or chemotherapy to mop up any rogue little tumor cells. What treatment specifically depends on is tumor type, how aggressive it is and whether or not it's spread. I had a very aggressive tumor(or 2- plus one less aggressive and one arm tumor whose aggression is still being debated). It had not spread to lymph nodes, which was really good. But due to the aggressive nature- the standard of care( what treatments are considered best bet for each disease treatment- a way of regulating care) supports radiation and/or chemo. Due to my classification as genetic mutant and propensity towards sprouting tumors- radiation gets pushed to the other side of the table. It can be used- but there's been this pesky problem of more tumors popping up in the area of radiation for genetic mutants such as myself. So the recommendation was chemo, hormonal therapy and targeted therapy. I started doing my research. I made an appointment to see one of the leading specialists in breast cancer and Li Fraumeni Syndrome. Nothing gave me warm fuzzies. It all seemed bad and worse. It was a maze of words like risk and chance and best bet. Best CHANCE at cure. Reduces RISK significantly.  The thought of chemo made me nauseous and prone to fits of anxiety. I don't care about the hair loss- it's temporary- I could also live with feeling like crap for a lengthy period of time- I have grown 4 humans- but I found no piece of research or data that definitively proved to me that the benefits of any of those treatments outweighed, far surpassed or even came close to the risks. The significant risk reduction was less than 20% when I crunched numbers- depending on how you crunched them and what factors you used- it could vary from 16% to 50%- in risk reduction. I won't scoff at 20-50%- we are talking about my life here- or are we? No, risk recurrence refers to disease free recurrence. The number variants you see- can be due to how the recurrence is tabulated- some don't account for metastasis(spreading of the initial tumor to other parts), some don't account for secondary tumors that occur outside the field of treatment- some don't include secondary tumors at all. When you start talking concepts like absolute risk- is when people start getting a little jumpy. -There's no way to tell absolute risk- every body is different- we can't tell why some people get secondary cancers and some don't - we can't tell why some people have heart failure on chemo and others don't- we just can tell if there are predictive signs- but absolute risk starts taking into account when people die or demise from the treatment itself as opposed to the disease. People rarely discuss those numbers- as it is terrifying. That stuff is lumped in the inches deep of paperwork you sign if you choose to do treatments.  It's a best guess scenario- all of it.  Every body is different and everybody faced with this monster deserves the best chance at beating it. I've talked to many long term survivors with this mutation- well the few that there are anywho- the opinions are split on chemo and radiation. All are controversial. What everyone agrees on is that is is a personal choice- you have to do what feels right and what is right for you. The problem is when you know what's right for you goes against the grain and the standard of care.

I watched my dad and brother have horrible side effects from radiation and chemo that in all respects were exclusively palliative- that means aggressive attempts at buying time and comfort. Brain tumors continue to be one of the toughest tumors to treat for several reasons. You can't cut it out without major damage. Not so many things cross the blood-brain barrier effectively and if they do- finding therapeutic concentrations without debilitating side effects is very tough. I watch Lily Kay Monkey have many complications from several chemos- and we live with the after effects of a few. Hair grows back- but not in a way that will replace the hearing she lost. She will never have normal adrenal function. She has higher risk of growing more cancers. But we have her. She is still here. I live with a shining example of why chemotherapy works. I live with the after effects too. Not a huge price to pay- to have her here. But sometimes those after effects are not so easily dealt with. The problem is we don't know how Lily would have done without chemo. The numbers and data show there was a high risk of recurrence. The leading specialist in her cancer told me the protocol was the best chance we had. SO we did it. It was not an easy decision for me. It is a decision I wrestle with every time she gets sick and every time we have scans. But she was a child and there are many who find it criminal to not exhaust all possible treatments in search of a cure.  Then I am reminded of the nights I laid next to her praying for her not to be taken from me quite yet and chemo held that promise. That has always been the promise of chemo. It gives people the hope of potential cure when nothing has been shown to be a definitive cure. SO many choose to face this battle armed with an arsenal of toxic chemicals knowing that it's a battle of killing off the bad cells before all the good ones and tempering collateral damage.  What it comes down to is that people need to fight the disease. A surgeon can take it out- but after that- what else is there to do? How can we be sure it won't come back? Any good doctor will tell you- they have NO idea why some people do well and others don't. Researchers spend a lot of time crunching numbers to try and find a correllation. I have my own theories. Some people find faith, some people meditate- some visualize. One doctor will emphasize balanced diet and exercise as part of treatment and 2 seconds later call nutritional supplements quackery and downright irresponsible.


I decided early on that I did not want chemo, but I committed to doing the research and asking the experts. It wasn't a decision as much as a feeling. I don't know if I would have felt differently if there had been lymph node involvement.  I also know that for several years I have fielded immense amounts of stress. I will never know what exactly caused the cancer to grow and why now- I feel firmly that the stress is a huge contributor. Chemotherapy adds additional stress to the system. Basically you are hosing down an entire yard with weed killer and hoping with all hopes the grass will somehow grow back. The targeted therapies have huge promise. The benefits of chemo without the systemic damage- but they still can take a toll. I am somewhere on the fence with the hormonal treatments. I trust the body. The body is one of the most amazing machines ever created. I have not always taken care of mine as well as I should have. Sometimes we all need a giant kick in the breast or three to get us on the right track. I know that the cancer did not just pop up in the past few months. I know the body is perfectly capable of fighting off cancer of given the right tools. I have one strike against me. Genetically speaking- my body cannot fight tumors like a non mutant. Cancer is a multi step- multi checkpoint failure. I already have one major check point knocked out. I firmly believe that at certain points, adding stressors- like chemo or radiation sometimes can do more damage than good. That is my honest to goodness gut feeling with very little evidence, circumstantial, anecdotal or otherwise. Since this p53 mutation is so rare- there is not a lot of data- and hardly and long term studies to definitively discourage the standard of care. What is known is that people with these mutations have a lot more tumors and a lot more rare tumors pop up and multiple tumors over many years. SO what if the identification and treatment of tumors has gotten so much better that people are finally living to see the collateral damage portion? Right now, I don't have systemic involvement. I do not feel fighting it with a systemic toxin is the appropriate call. Instead I have chosen to incorporate natural cancer fighters and preventions into my diet and lifestyle and to eliminate as many toxins as possible. If you know me- this is not easy. I love food. I don't so much like to exercise. I love sweet tea. But when I stopped to slow down and listen to my body- I realized it was telling me things- I just wasn't listening. Now, I haven't gone off the deep end and I still do endless research. I just stop when I start to get stressed and refocus. I take the proven knowns- not the maybes. But I am putting faith in the fact that I am not done yet. I have many more battles to fight- I have so much yet to accomplish. I will be taking better care of myself and my family- which means letting go of a lot of things. I don't have any definitive answers. I will not say that I won't do treatment down the road- I will say that right now the best treatment for me doesn't involve chemo. And I reserve the right to change or amend plans or have them changed at any time. It doesn't mean I'm not fighting- it just means I'm doing it my way.

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 hiding....in 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.

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?

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.

Recovering...

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. 

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.

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.