Tuesday, December 17, 2013

Party Hats

Bring out your party hats, top hats, black tie, best dress, streamers and party favors. It's time to have a Cancer Begone Party where the guests of honor will be my boobies. I'm sorry to say that this party will have to be done on an individual basis with your own flare. Please feel free to send pics as to extravaganza that was had. I was given a diagnosis on 12/12/13 and today in our meeting with our doctor we are choosing to take action. On 12/20/13 I will undergo a bilateral mastectomy and take off my breast tissue. The physical recovery will end up being the least of our worries as the mental and emotional is an unknown. Thank you for being on this journey with us as I take charge of the rest of my future and explore the impacts. Know that we feel loved. We are numb and in shock but feeing empowered by not waiting and taking control of the only thing we can at this time.

Monday, December 16, 2013

Broken Open

I love my Wife. Each day she surprises me. Each day I love her more. This process that is occurring isn’t just occurring to me but to us. I have never felt more loved and scared.

I am holding on to a very thin line. Between the bouts of panic and clarity She is there creating a clearing for safety, love, action, partnership and the future.

She brought a book home from book club and placed it in my work bag “Broken Open How difficult Times Can Help Us Grow”. I haven’t even made it out of the prelude and I’ve found something that speaks to me. A quote, and the time came when the risk to remain tight in a bud was more painful that the risk it took to blossom. The author speaks about how it was time for her to find out what she really wants.

This process can’t be pushed through or done logically. The feelings must be felt and deciphered and maybe even wagered upon. I’m an Aries; I’m pretty good at putting my head down, pushing through and suppressing that which I really feel.

I’m slowly including more people in the process so I am unable to hide, from myself. This seems to bring some calm and has things slow to a point where recognition and understanding almost occur.

I must sit with these demons and see what I must see, even while every thread of my body is in disbelief, anger and “I don’t wanna”. I need to breathe even when breath is gone. I must be willing to be broken open. Even today, four days out, what I was dead set on has morphed and I must be ok with being open to all the possibilities. Having options at this point is actually more difficult. I desperately want to hold on to that thin line and force it. The tighter I hold the safer space my Wife creates for me to let go and I hear, we will catch you, you will be ok, you can kick this and I feel loved not damaged or broken.

Mental Melee

I have waited for many things in life…

Circled items in the Sears catalog to appear under the Christmas tree
A pony and one that needs no up keep
Grades from school
The end of a day to come to a close
Traffic to clear or a light to turn green
My wedding day to walk down the isle

In all other areas I’ve been trained to NOT wait
Manifest life as I want it not as it is handed
Be in action to cause action
Bend as a reed in the wind and avoid the snap

This waiting I do now is like no other
I’ve taken that action, which can be taken
I wait for others to do their part
I in essence wait for my life

I still act but am unable to focus
I flounder in my current life, frozen to a degree
Waiting so I may either, cheer at the top of my lungs, or take the next action
which determines the amount of waiting I might have in my future

This type of waiting I wish on no one
I say take action, create it, you are in control
Well at this point I can barely control my thoughts
I plead and I beg with myself to stay positive, and wait
I plan my day to distract, and wait
I wash through panic and calm, and wait

I’m over waiting
I scream that I’m ready,
Just tell me

Now I have this hole, a physical reminder
A missing piece of my body
Missing pieces from a day
A twinge of pain
Something to heal, and wait

The physical reminder places me in an increased state of,
anxiety, disbelief, betrayal and heightened attention.

I wait, I ignore, I plead, I beg
The only action to be taken is to wait
Action is attempted,
only to fall back into a state of no movement

I want to rip at IT, claw IT, anything but wait

Written 12/11/13 9pm

Sunday, December 15, 2013

Waves

What I have been surfing these past few days must be those types of waves people talk about, aren’t they called mavericks? You know the type of wave that people hear about from around the world but very few witness and those do don’t get to live to tell about it.

Some moments I feel ok, calm and maybe in control and then it hits out of no where. The wave of disbelief, anger, confusion and despair take me under. There is nothing to do but fight for air. Sometimes after the passing of a wave there is nothing left and for an instant I experience silence. No matter what stage I find myself in I am very thankful for all those around me, especially my wife and some very humble cancer survivors who are currently in the throws of beating the big C!

Mostly I have felt like my heart is going to explode inside my chest or I have to push it from my throat just so I can breathe. I yell and scream and want to punch or kick my way out of where I am, trapped.

Why me is such a stupid question but it comes up. The list of things I’ve done that should have bought me a pass comes rushing in and then I fall. I dust myself off or my lovely wife picks me up off the floor where I’ve fallen to a heap and I wait for the next set to roll in.

The worst is I can’t sleep or yet it’s when I have fallen asleep and I wake and my mind thrashes out, teeth bared and everything is bloody. The incision wakes me and I want to scream.

I don’t want to make these decisions. I don’t want to manage a disease the rest of my life. I want it over and I want it over now. I don’t want to deal with the emotional trials that I’ve been entered into.

I wait a few more days and meet with the doctor to create a plan. Each day gets, quieter so to speak or maybe more numb. I don’t have all the information yet and my mind jumps, races, tackling ideas and decisions. I try and find out info so I will be able to ask the right questions or more importantly I try and figure out how I feel and what I want. This being the hardest part of the equation, how do I feel and what do I want.

I currently have the understanding, weather it is correct or not, that the removal of the breast tissue would halt/stop the disease. I would not have future management of the disease. I won’t know for sure if that is the case until Tuesday. However, I’ve already told the Doctor, take the damn tissue because I can’t live with the worry in the back of my mind with frequent treatments or screenings. I’m really not that attached to the tissue enough for it to kill me. Mostly I saw how I reacted to working my way through the diagnosis and the waiting and the worrying and that was crippling. My hope is to get connected to what I want/feel so that some decisions can be made this Tuesday. I’m trying to take some steps back from the situation instead of just saying cut them off now. This is of course when logic is triggered vs. pure raw emotion. Yet, as logical as I can be I feel I must claw through this sticky rawness to find me on the other side.

As the days have progressed and more since the incision, I’m discovering that I might have some attachments to that damn tissue. Ahh, the next mental mind fuck and rat race…

10:30am 12/12/13

I sit in the waiting room and stare down at the paper. Surely I can read and interpret this simple report. The report clearly states in black and white that the micro calcifications were classified as DCIS (ductal carcinoma in situ). The mind stops, the heart goes into my throat and I get up and walk out. To debunk what I am reading I call my friend who is a Nurse Practitioner and ask if she will read the report since I haven’t heard from the doc. I meet her at the Library and then at 10:42 the doc calls me and we talk for 12min. These 12 minutes will change my life…

He confirms that it is indeed DCIS. He expresses that it isn’t invasive cancer, that is good, and can only come from the breast tissue. We discuss what it means, options and how difficult choosing the next step can be with DCIS. The issue with DCIS is that it can turn invasive and some forms have a higher likely hood than others but there are good manageable options. We talk a bit about how I feel and any questions I have at the moment. He confirms that we have a scheduled follow up on the 17th to discuss further options and more Q&A time. In this discussion I impart to him that I do not wish to manage this but want it gone. I don’t want radiation, lumpectomy and 5 years of estrogen blocking medications. I am not committed enough to saving the tissue to manage to have the mental and emotional damage waiting to see if it will come back, grow or damage my body through radiation and drugs. I want it out and now.

He imparts to me that he could definitely find time to do the mastectomy before the end of the year and would block time in his schedule toward the end of the week BUT that Tuesday we would discuss options and see where we are at then. He also made it clear that where he could do the mastectomy by the end of the year the possibility of doing all that is needed (consults with plastic surgeons, and more) that he saw no way to complete a reconstruction by the end of the year.

Now I move forward???

Past to almost present...

Since October I have been wading through what started as, what I hoped was the process to rule out any health issues. I never ever dreamed I would end up where I am. This post will be long to bring me up to date, somewhat. Then I hope to dig into a few topics later and do more frequent updates to avoid these long posts.

I am a healthy 42 year old female so when I mentioned to my doc that I’ve had some changes and pain in my breasts I wasn’t worried. I was more like ok let’s just get this checked out. I mean, we all know pain isn’t a sign of cancer and we all look for lumps.

First, I must step back and say this process has been everything from frustrating all the way to infuriating. I had many delays in just scheduling to get my, routine, mammogram screening. This was in part due to waiting for past films to be sent and processed into the system for the radiologist to compare.

I went in for pain and discomfort to the right breast. When I arrived I found out that my films, which we waited on, would not load into the system. Someone was kind enough to write a note about the issue with the films but that was as far as it got. A week later I was called back in to look at my left breast and I insisted there must be an error since I was concerned for my right breast. They insisted it was my left and we went through the scheduling process again. Of course we had to delay because no one did anything other than write a note to get my previous films. When arriving for my further evaluation I had to inquire into my films. The films were still not loaded into the system. Only when the radiologist got upset did we get any action around getting the films sent again but this time sent via FedEx to arrive the following day.

The doctor was hesitant to talk to me until he could compare the films. After some urging he calmly but intensely explained what he was seeing on the film. He wanted to look at the previous films and see if the same thing was present two years ago and that would have to wait until the following day. They had called me in due to a possible lump in the left breast that needed to be magnified. No worries there since upon magnification the tissue displaced and there was no lump or density on the film. However, upon magnification the Radiologist found a cluster of micro calcifications. I won’t explain in depth but when there is a cluster it is a possible indication of rapid growth. Before leaving the Radiologists indicates that we should biopsy this area but that due to the location and depth it could be very painful and suggests a surgical biopsy with anesthesia. With my mind racing I insist that I can take the pain and we schedule the next possible needle biopsy, one week away, and I push right over the fact that he is also concerned we wouldn’t get a good sample. I just wanted this done fast so I could get back on with life and set worry aside.

Now the race of my mind is off and running. I went home and tried to remember back to Nursing school what implications the micro calcifications could possibly have for this healthy 42 year old. I found lots of info on the internet and in my books, maybe not the best use of my fraying brain. The mental race cranks up a bit more and now I wait for my films to be sent, compared and interpreted.

The following day the Radiologists informs me that the same spot of tissue that they called me back in for evaluation was on the films two years ago. No answer to why I wasn’t called back in two years ago to be further evaluated on the left side. That was good news that there was no change in that tissue spot from two years ago and the mental racing slows a bit. Actually, it they had the films to compare they might not have even called since there was no change to the tissue density over two years. Then he informs me that the films are not complete and the area of tissue containing the cluster of micro calcifications is not in the film, really come on people. There is no way to know if this grouping of micro calcifications was present two years ago and or has changed in any way. Sparks fly from the gears in my mind as he informs me that a biopsy of the cluster needs to be performed. As much as I wanted to know right now what this cluster meant I asked him about the surgical biopsy vs. needle biopsy. He insisted that the biggest reason for the surgical biopsy was to insure a good sample and avoid an issue with the needle biopsy only getting skin tissue. The location was too close to the surface and nipple area.

As the Thanksgiving holiday approached causing pauses in the work week I attempt to schedule a surgical biopsy. You can’t schedule a surgical biopsy without meeting the doctor first and then you get placed on their OR schedule. At this point I’m worried, nervous and can’t believe I have to wait so long. The first available meet and greet isn’t until 12/11/13. Did I mention this started before Thanksgiving?

I can’t wait, I’m going nuts but every turn I take I get stopped. It felt like people (medical) forget we are people and we have thoughts and emotions during this process. I tried to express my upset and disbelief about the first available scheduled appointment to my PCP. She didn’t get that not knowing and the waiting felt like it was killing me. It was calmly communicated that it would be fine to wait since it wouldn’t change my prognosis.

Here I share the generosity and understanding I gained from a fellow coworker of my wife. She has gone through the process of being diagnosis with Cancer. She understood, she felt and connected to me. She jumped right into action and in a few hours got me scheduled with a general surgeon the following day 12/5. Everyone at Lydia’s work was amazing and rearranged things so she could attend my appointment, no questions asked. Not all Medical is non feeling!

The doctor was great and really got how worried I was. He tried to settle my worries by telling us that he has seen a lot of films and what he was seeing on mine didn’t concern him. He said “I’ve seen a lot and some you see on the films and it’s clear that needs to come out now but with mine he felt it was superficial enough that it was most likely due to trauma”. Upon my level of anxiety and intensity he agreed to squeeze me into his surgical schedule sooner than later. He got me scheduled the following Monday on 12/9. Wow that is great because my first meet and great with a surgeon wasn’t even going to happen until 12/11.

On 12/9 the surgical biopsy went off without a hitch, other than the grossness of moderate sedation. Now we just have to wait for pathology, no problem. The surgeon once again reassured Lydia, cuz I was out of it, that the breast tissue looked good and healthy! Yeah! However, he also informed her that in the excised tissue they found another cluster of micro calcifications. We were told that the patho results might be back Wednesday right before closing but if not then they would be back on Thursday and we could call and get them. Ok no big deal we just have to wait till Thursday.

Nothing I could do over the next few days would calm my mind and now I had this physical reminder from the surgical incision. Instead of just mental/emotional pain I now had breast pain. I had no clue that I would be impacted by an incision. I can’t even express it in words. I “patiently” waited and called the office Wednesday evening right before close. I was reassured that the nurse would call me in a few minutes but no one said if the results were in. I wait and no call occurs so I call back and find out they have closed. The darkness of the night closes in and I wait till Thursday.

The office opening time of 8am comes and goes and I receive no call. I call at nine and I’m told the nurse will call soon. I call at 10 and I’m now told the doctor will call me and my mind breaks out of its cage and goes to high ground. I can’t wait and it’s time to be in action. I’m a nurse so surely I can go pick up my results and read them. I take off for the office and request for my results. The poor receptionist tells me “I’m sorry we can’t release those because the Doctor hasn’t signed off on them, He will call you between patients.” I make a request that sooner the better because I have to work tonight. Now I get sneaky and drive to my PCP’s office, neurotic or just plain ole in action I’m not sure. I politely inquire if they possibly received my patho report this am along with the surgeon. Bingo they did so I ask for a copy. Ummmmm they gave me a copy and clearly I don’t think they read them prior to handing them over to me.

It is time...to write.

I am reactivating this blog as of today 12/14/13. I have thought a lot about writing and possibly blogging over the past few weeks. As the story unfolds you will see that I’ve been a bit occupied and possibly hoped all the drama would be for nothing. Now I’m at the point where I need to write. I need a gift to myself.

I choose this process to be a gift to me and by gaining that giving a gift to those around me. I’m attempting to navigate through the confusing landscape I call my thoughts and emotions.

I hope to go back in time and share the whole process. However, now I wish to share why I write.

I write…
because I must
because I see no other way
to get to my subconscious
because I hope and I need hope
to find silence
to gain clarity.