Wigs, Margaritas, and Adult Entertainment....got your attention?

Okay, I tried to upload a ton of video time from the wig party, however, I had some difficulties with that so I was able to provide 2 essential pieces.  The first video is obviously of my girl posse and my mom who supported me through the event.  The second video is of my final wig choice.  

The wig party was held at a boutique called "Wigged Out", the owner is in the second video in the background with her wig cap on, she looks bald...her name is Tina, she was diagnosed in her early 30s and had a horrible experience with the wig buying experience and the quality, or lack there of, in wigs, so she started her own business. 

The wig party happened on the 2nd weekend of December (I know I'm running a bit behind), so I had not started chemo and was physically feeling pretty good. The party was awesome, however, I had been prepared of the worst, emotionally.  I had in tow my girl posse, mom, Xanax, and a box full of Kleenex in my purse. I mean really, who goes wig shopping at the age of 30, unless you are in adult entertainment or have some weird medical issue...again, my life is surreal in these moments. 

I was pleasantly surprised that not even a tear was shed and I found a great wig!  I feel like the wig that I chose gives me a little "kick cancer ass" feeling!  After the wig party we gladly sat together and laughed over margaritas and Mexican food.  That night was the best medicine.  I laughed so hard with my girlfriends and mom that my recently surgically placed portacath ached! 

Physical Body and Emotional Body....two very different ideas

I just wanted to update the blog with my current physical condition.  My last post centered around the horrible bone pain from the Neulasta shot.  I finally began feeling better yesterday, there was only intermittent bone pain throughout the day.  I was even able to get out of bed and Lil Bit took me to run an errand.  I feel a little more prepared to cope with the next cycle of chemo and Neulasta which is just a few days away.  I will be honest I am dreading it and dreading the fact that I have to experience all of this 7 more times! 

My mom, told me this morning that I should update the blog today so everyone would know that the bone pain has subsided and to let everyone know I am not so pissed off today. In my last post I was pissed, and I was in physical pain which made my pissed off attitude even more intense.  I think it is safe to say my pissed off attitude is just more manageable today, but I am still pissed. 

I am pissed to almost tears as I type this.  I am pissed that I will remember this Christmas Eve and Christmas for more than undesirable reasons.  I am pissed that I can't physically be strong enough to go do our Christmas traditions with our family, I am pissed that I have a short boy haircut until my freaking hair falls out, I am pissed that Sean has to even worry about me, I am pissed that I can't hug and kiss all over my nieces and see them open Christmas presents because I might get sick or too tired, I am pissed that I have stacks of medical bills now and have to worry about that and insurance negotiations, and I am pissed that Lil Bit even had to go with me to a support group on Monday, I am pissed that I sat in the support group and thought about how I could facilitate it better, I was pissed that I was the patient and not the counselor, I am pissed that I can't fix this now and move on now, I am pissed that during the support group they discussed one of the "exercises" would be a life assessment and we will discuss our life goals, blah, blah, and how we want people to remember us......I seriously wanted to raise my hand and say, "f**^^%(% you!" Really, I can't even identify as being a cancer patient right now and they were making me think that I was going to freaking die. I know therapeutically where they were going with these questions but again I am really struggling with even being a patient at this point.  I am pissed that I have to anxiously wait for my wig to be delivered, I am pissed that for a year and a half I have been trying to tell doctors that something was wrong and they made me feel like I was crazy, I am pissed that I even go into a building that is named Kansas City Cancer Center, I am pissed that I have to be so weak...... I am pissed that I am pissed. 

So sorry mom today my physical pain has subsided and hopefully this rant will have made room in my emotional body for a less pissed off attitude in the days to come....but I can't guarantee anything.  I am glad I got all of that out, there may be more later, or who knows maybe a happy post will be in the cards soon.  Thanks for listening and accepting my honesty, I am not perfect but I refuse to not allow myself to fully feel the emotions of this crazy journey.  Much love, have a great Christmas! 

Christmas lights and dishwashing make a difference

Sorry, it has been a few days since my last update.  I had a virus on my laptop and Sean was able to fix it.  I have also had a rough few days recently. 

First, before I get caught up on things, I had originally wanted to forget about Christmas.  However, Sarah aka Lil Bit, brought over some Christmas lights for a tree and Sean set the tree up and it was amazing.  It meant so much that they did that.  Also, my friend Shelly came over and unloaded the dishwasher and loaded it again.  At first, I was a bit put out, because I really felt like a pitiful invalid, and anyone that knows me, knows that this goes against all my physical and emotional makeup.  It has been really hard learning to allow people to help me.  Against everything I was thinking, I let Shelly help me, I didn't really like it, but afterward it was really nice to realize Sean and I didn't need to do that task and I realized she probably still loves me just the same, even though she has now done my dishes, and she probably doesn't think I am any less of a person.  Okay, I am slowly getting the idea here. 

In the past two days I have been back in bed battling significant side effects.  However, instead of chemo side effects it has been side effects from the Neulasta injection.  This is the injection that stimulates my long bone's bone marrow.  I get this each time, the day after a chemo treatment. 

So I received this injection on Dec 14th, and the oncologist informed me that it could take 5-7 days for me to feel the side effects.  Somehow, I was either paying attention to other side effects or emotionally unable to process this part of my oncologist's original conversation because I really don't remember them saying it would be this bad.  There is a possibility that they minimized the side effects in order not to scare me because, holy jesus I have been in some pain. 

Exactly 7 days since the injection I woke with pain.  I tried a hot salt bath for relief and only came to the realization that the pain was getting worse.  I called the oncologists office and informed the triage nurse of my symptoms, which basically boiled down to pain!   She confirmed that the pain would last for about 48 hours and I would most likely have a low grade temperature and that I should take Ibuprofen.  Let me just say I proceeded to lay in my bed, cry quiet tears and then just when enough was enough, I just let the real tears fall.  I kept saying to myself, this f**ing sucks!  I thought surviving the chemo sickness was going well and then just when I thought I could spend more than one hour out of bed, this Neulasta injection kicks me in the face and sends me right back to hiding under the comforter.  And really, Ibuprofen, really, I wanted to really tell the nurse to go.......(fill in the blank). 

There was no relief, the pain was in my lower spine, and neck for the most part.  I couldn't even talk on the phone to my mom, she of course was worried.  I can't explain it other than it totally sucked!  My girlfriend Sarah came over at noon because she got out of work early and I didn't want Sean to know how bad it was so he wouldn't worry and leave work himself.  So Sarah helped me and just laid in the bed with me, by this time I had utilized some left over hydrocodone from my portacath surgery.  The pain has yet to fully resolve.  I now focus on the thought that my body is trying to produce something to heal myself and I only need to endure this pain for  48 hours.  I really can't even stomach the idea of chemo treatment and injection again on the 27th and 28th and I will go through all of this again, oh and again for 4 more freaking months.

I have noticed, and so has Sarah and Sean, that I have been extremely irritable recently.  So right now I am in the pissed stage of grief (so clinical right) and I am pissed that I have to even deal with freaking cancer and all the ridiculous side effects, this is not fair nor fun, I want a redo, I don't want to sign up for this shit!  Man this sucks!  Okay, I got that out of my system.

I think that the irritability is also stemming from the fact that I have been in bed everyday and I really do not feel close to the "Ashley" that I have been every other day in my life.  I hate feeling, looking, and being SICK!  I tried to go to the store for a few items with Sarah the other day....it was not a good idea.  I ended the trip sitting on a bench waiting for Sarah to finish the shopping and to pull the car up.  I will be honest I cried on the way home.  I cried because, really, really, the old Ashley can shop in her sleep, the old Ashley never needed help and the old Ashley surely didn't feel sorry for herself.  It's funny how cancer is teaching me so many things.  After this I know I will be a different person in various capacities, I try to focus on the lessons learned versus the pity party details.  ,

Today I got out of bed!

I will start by explaining my chemo treatment that was on Monday December 13th.  My mom and Sean went with me and my friend Kressy dropped by.  To say that it was an emotional few moments before the treatment started would be an understatement.  My blood pressure and heart rate were through the roof.  I had been "assigned" a "pod" for chemo, meaning in this large room there are 3 semi-groups of chemo chairs-pod 1, pod 2, and pod 3.  I will have the same infusion nurse each time, her name is Beth and she is really nice and I will always be in "pod"2.  I chose a chemo chair towards the back, so just in case I cried I wouldn't be front and center.  Sean and my mom were able to sit in regular chairs beside me.  We began things around 9:45 AM and ended around 1:00PM.

It was obvious to everyone that I was the young, new, scared girl.  Beth, the nurse informed me that they would be giving me Ativan, an anti-anxiety medication, via my portacath to help me calm down before the actual chemo started.  At this point I was quietly crying, and shaking with fear, so much for a brave front, huh. However, I managed to hold it together and did not have a complete snot faced crying emotional breakdown, yay goal #1 met!

The Ativan and some initial flushing of my portacath occurred first.  My portacath was still sore from the surgery and placement on the Thursday prior.  It really hurt as Beth was pushing around the site to locate the actual entry point, but once she located that the actual stick of the needle was not bad at all.  The portacath never hurt during the treatment either. 

So these first 4 cycles of chemo have 2 drugs involved, and one of them is a bright red thick consistancy and Beth has to sit next to me and "push" it in my portacath.  I have to eat ice chips or eat popsicles to keep my mouth cold in order to avoid mouth sores. I think you can see it in one of my videos, and then the 2nd drug just drips from an IV bag. But, as Beth sat there "pushing" this chemo into me, it was difficult and surreal to think this is my life right now.  I was trying to focus on the chemo as a "medicine and helping me" but with Beth sitting next to me and seeing this bright red thick substance pushed, it was undeniable that I was the "sick" person.  It was also difficult for me to see my mom and Sean feel so helpless.  I can't imagine what it must have felt like for either of them.  I redirected my attention with the help of some guided imagery and Sean's excellent job at massaging my shins. 

There was a lovely middle aged woman there getting treatment in my "pod" and she could tell that this was my first treatment, so she lovingly gave me tips on managing some side effects and she had a nice friend with her that sat next to my mom and providing support to for my mom for a bit.

I felt extremely tired and weak, and just walking to the car took all my energy.  I had an immediate headache that was terrible.  The nausea, headache, and lethargy were the worst Monday thru Wednesday.  I barely moved out of bed and took medications relentlessly.  I have no desire for food or the smell of food.  I have had peanut butter on toast and a few smoothies.  I saw the dietitian today and they said to just keep trying what we have been doing.  This is going to be a crazy ride my friends! 

 

 

 

 

I so appreciate any text messages, phone calls, and/or comments on the blog, it is very supporting and it brightens my day.  It may take me a bit to get back to you all or update the blog but know that all of your encouragement is such good medicine for me.  Love you all!

A few things have been going on, just a quick update.

So, my girls, and mom, had a wig party on Saturday, complete with video clips, and tons of laughter.  Sunday was preparing for chemo on Monday, my mom and I went to eat some sushi, b/c that will be out of my dietary plan until chemo is over.  And lastly, had my first cycle of chemo on Monday, again complete with video clips.  I have an appointment this afternoon for a Neulasta shot that will boost my "long bones" in my body to produce red blood cells.  I am really tired and nausea is something I have plenty of medication to take around the clock.  With that being said, it may take me a few days to get the videos uploading and blogged regarding the wig party and the first chemo day...don't worry it will happen though.....promise.  I just want to say that I could not doing any of this without Sean, my mom, my amazing girlfriends, and my family, the support is so helpful.  And to my girlfriends, the laughter and time spent together was the best medicine....and my mom loved you all and the experience as well.  Love you all!

Did you see that bus.....the one that just ran over me!!!!

So on Dec 7th my cancer world began to really rock.  I was scheduled for a CT body scan and Bone scan on Wed. Dec 8th, then surgery for my portacath placement on Thurs Dec 9, then meeting with nurse practitioner and the financial adviser, within the cancer center, on Dec 10th.

So here are those updates.  The CT body scan showed that I have some scattering of cells in my chest wall and abdomen and a 1.5 cm nodule on my adrenal gland.  The scattered cells are not necessarily cancer, but the doctors will do another scan after chemo to see if these tiny cells have reacted to chemo in any way, if they get to be fewer then there is a good possibility that they were cancer, if they are unchanged not so likely to be cancer.  The nodule on my adrenal gland is not suspicious for cancer, but could have been the catalyst for my weight gain.  The Bone scan looked clear! 

Okay, so the surgery was scheduled, my awesome Lil Bit (aka Sarah Buchanan) was an awesome chariot driver and nurse for the day.  I have video to prove it, I am planning to attempt that upload that link with this post so bear with me.  My girlfriend Kressy, had the great idea of a small video camera for my blog and appts, so she got me this awesome little video camera, now I have to be smarter than the camera and learn to upload and post to the blog!  lol

The portcath is a permanent IV placed in my chest under the skin, so chemo can be administered through this.  Otherwise, the veins in my arms would eventually be desecrated with chemo, such a pleasant thought right!  The surgery went as expected, the pain was a bit much during the evening, my amazing oncologist called me herself to check on me and decided to call in some pain medication that night.  I was able to rest well!  I woke around 3:00 AM, remember this is my magic hour for insomnia, and I was hurting and my hives were itching uncontrollably.  I took a pain pill and did not really inspect my hives, they have been out of control with all the anxiety and physical things going on in my body lately.  Oh my, I woke up at 5:00AM when Sean had to go to work and I was covered in hives.  After the surgery I was to keep this gauze and suffocating tape on my chest for 24 hours, however, it appeared that my skin was burning under the tape.  Sean went to work, I was going to tough it out....blah blah!  I eventually could not stand it any longer, I began peeling the tape off....not fun!  I had a reaction to the tape over my entire chest and up my neck and around my left shoulder, oh and I felt like a bus just hit my chest.  Life is good....right!  Lol. 

Sean and I met with the nurse practitioner later in the day, she confirmed it was fairly common for that type of reaction to happen with the tape they use after surgery...really....really, someone could have said that, or USE DIFFERENT FREAKING TAPE!  I am miserable wanting to itch, hurting like a cow is sitting on my left chest and arm and now we need to sit for an hour and 45 mins to talk about chemo and then financial obligations.  Really, really!  So the meeting with the nurse practitioner was overwhelming and long!  The moment that I couldn't really handle it was when she was reviewing the medications I would be taking to manage my symptoms at home for nausea and pain.  I couldn't handle it b/c these are the exact same medicines I have educated my terminal end of life patient on.  This is impossible, I cannot be a patient, I cannot be in the same category as the very patients that I have cared for!  Too much!  I don't even have the words, other than curse words! 

So I got sent home with a giant bag of information, medication organizers, and that underlying feeling of panic!  Oh and I met with the financial adviser and each cycle of chemo alone is $6000, thank god for health insurance! 

So today, I am going to have a wig party with my girlfriends, and try to pick a descent wig for myself, then dinner and then Sunday will be relaxing and preparing for Monday.....chemo! 

The meeting of the minds

Okay, a quick post to update everyone about the last week of doctor appointments and testing.  I had an MRI of my breast, which was  crazy.  I hope no one ever experiences cancer but if you are claustrophobic you will need heavy sedatives to cope with all of these tests.  I have had an MRI before, no big deal.  The shear size of the machine is overwhelming, oh and the loudness.  This MRI was a bit off putting for me, and here is why. 

The MRI was to be done with a contrasting agent via IV and timed.  So I had to lay face down like superman, I mean wonder woman, style with and IV in my left arm.  My boobs were then tugged through two holes in the table and the nurse was literally pulling them through the holes....like I was a freaking cow....awesome, I guess dignity and self image were not included in my care plan these days! 

Then once my boobs were adequately though these holes and I was laying perfectly still the nurse informed me that she was then going to place a box around my boobs! Really.... Really!  I need to feel like I can escape at any point and now my boobs are tethered to this damn table and my arm will be of no help either, great!  I start to freak in my mind....just a bit....I ask the nurse, can you put the headphones on me NOW!  She did, and I had a few tears about to fall when I said, fairly stern, "just play Dave Matthews, and turn it up!"  That was a horrible hour of testing. 

Anyway, results confirmed that the cancer in my right breast has nearly doubled in size since beginning of November and the cancer is still in my lymph nodes.  My left breast still appears to be clear, however, she didn't get the memo that it doesn't matter, I am getting rid of her too, I am not dealing with this shit ever again!  :)

So when this cancer so graciously consumed our lives, Sean and I were overwhelmed, but knew that fertility was one of our biggest concerns.  I just kept crying saying,"we need to have a baby!".  I think as a woman I feel like that is something I want to give my partner, and a child is a true reflection of your partnership.  I was devastated, yeah cancer sucks, but not to have a baby was to hard to imagine.  Sean and I had spoke about adoption when we first got together and we were both open to that, but now we look at adoption differently.  Yes we would still adopt, but now it seems more like and option we would choose because I am broken goods, or we have been defeated, that sounds so harsh when I type it, but I could focus on nothing other than what it would be like to hold "our" baby someday.

So everyone in KC was telling us if we had a chance at fertility related to cancer we needed to see this Dr. Kim through KU Med Center.  My doctor offices, yes plural, worked and were able to get me into see him on Monday, Dec 6.  He is definitely a research doctor, he is a bit socially awkward, and speaks in percentages/graphs and has minimal eye contact.....whatever.....just help us! 

So he looks over my history and gave us the following options.  Do nothing and hope that chemo does not kill all my folicles, do low dose hormones to stimulate ovaries to harvest eggs, do a laproscopic surgery to harvest and freeze my whole ovary, and if none of those things work out then after treatment I might be eligible for donor egg embryo.  Wow, here my OCD and me have been begging to make some type of decision or have some type of control over my life over the last 4 weeks and now this huge decision is before us and I appear to be crumbling. I say crumble, b/c at first it seemed like I had no idea what to even think and definitely didn't know which option to choose. 

Here is the things to factor in on what to decide.  My cancer is driven by hormones, so if we harvest and freeze the eggs, they first need hormone stimulation, so this has potential to feed my cancer.  The other thing is this fertility doctor has around 10 days to complete whatever we choose, because my oncologist is very concerned that the mass in my breast is doubled in size and overall this cancer is more aggressive than originally thought.  The other things to consider is that chemo my make my sterile.  And finally, I have polycystic ovarian syndrome(PCOS), which means that my ovaries do not release eggs and they sit on my ovarian wall and could potentially become cysts. Oh and no insurance will cover the ovarian harvesting b/c it is so new, but Dr. Kim has a deal with KU Med that it would only be $6000, which in the fertility world would be a hell of a deal. When making the decision the money was never a factor, but still!  Ahhhhh, yes my friends, not so easy!  All I want is a freaking baby!!!!!

Sean and I agreed that the hormone stimulating egg harvesting was absolutely out of the question and we thought that our oncologist would also agree with that decision.  So it boiled down to, doing a laproscopic surgery that would harvest the ovary or do nothing and pray I was fertile after chemo.  An ultrasound was preformed and my PCOS

Sean and I sat in the car in the parking lot, Sean was optimistic and happy that we were even given options, I was not at that emotional place just yet.  I was in the pissed stage, so here I go.  I am angry that Sean and I even have to waste our time with thinking about any of these treatment options, including cancer, and not allowed to focus our attention on planning our wedding/honeymoon.  I am pissed that there are people who take their children for granted or have not spent every minute with their children and appreciated it.  I am mad that there are people who just have kids like litters of dogs and don't appreciate it.  Jesus, this is really not fair!  Ok, so I got that out of my system, momentarily.  Sean was awesome and supportive, I love him!  He said,"Ashley, we have been dealt a really bad hand right now, we are going to keep playing the cards and eventually the easy card will show up, we are due!"  Ok, good point....let's move forward! 

Sean and I thought that trying something rather than hoping for the best would, emotionally allow us to feel like we had some type of insurance plan of fertility throughout cancer treatment.  The possibility that a PCOS ovary will work after harvesting is a concern too, but one we are willing to consider.  We ended the day with leaning toward the ovarian harvesting, but wanted to talk with the oncologist to see what her opinion would be.  At the end of this day my head was hurting and I was emotionally and physically exhausted, I elected to hibernate under the feather comforter in our giant bed....which always seems to make things a bit better!

So on Tuesday Dec 7th the meeting of the minds occurred, Dr. Kim and Dr Rabe (oncologist) conferenced via phone and it was decided to do nothing, fertility wise, prior to cancer treatment.  Here is how that conclusion came about.  Most women do not consider PCOS a positive matter when confronted with fertility.  However, in my case PCOS may be saving our future babies during chemo. Since each of my ovaries are overwhelmed with the shear number of follicles on them Dr Kim believes that the chemo will only kill some of the follicles and after chemo I should have a more of a normal range of follicles left.  So with that, Sean and I realized we will be starting chemo as soon as possible. 

At 9:00 on Tues. Dec 7th, after talking with the doctors we decided to proceed with cancer treatment.  Hold onto your big girl panties b/c here we go.  Within the next hour my phone rang non-stop.  I was being scheduled for a multitude of tests, education, doctor appts and setting a chemo date!  I seriously need a secretary just to be in charge of my appointments...and eventually bills.  I am pretty sure that I will be experiencing PTSD just from phone calls and scheduling, I am not joking. At the end of this day, my head was hurting and I was emotionally and physically exhausted! Again, opted for the big bed and feather comforter to make it better!

So with the new scheduled treatment plan, that meant rushing to my office and informing my work that my short term disability would be beginning asap.  That was kind of crazy, but someone said it was a good thing it was so abrupt b/c I am the type of employee that would have tried to keep on working, just to help them out.  Newsflash: I have had to learn this lesson the hard way, cancer is making me slow down and realize I need to take care of myself first and this is not "selfish" this is "self preservation.....that's right ladies were are typically the worst at this, so think of it as self preservation. 

I have really never been a girlie girl

So all of you that know me, would probably know that I am not the girl who is enamored with glitter, bows, and over dramatic lipstick.  However, I will say I am in love with my glittery engagement right....hehehehe!  With that being said, the moment the talk of chemo was the center of my treatment plan I realized maybe I wanted to be more girlie. Yes, my long brown hair does not make me Ashley Lee, nor do my boobs, but neither do my arms or legs, but if I were to cut one of those appendages off I would feel as though a "part" of me was missing.  The thought of losing my hair was difficult, however, childbearing was my first concern.  Funny that my own survival really was not my biggest concern, but that's not what I want to talk about today.
So with the thought of losing my hair, over the last few weeks I have been overly determined to dress and feel like a girl as much as possible.  As if when the dread day I have to buzz my hair, I will magically no longer allow me to be a girl.  I can't explain my reasoning, I am just putting it out there.  I cut my hair short for the first time in my LIFE!  I donated two ponytails that were about 12 inches each to the Locks of Love.  The cut was to give me a week or so to gather myself before the buzz haircut occurred and wig shopping ensued. 

Another reason why I am struggling with the hair loss idea, is that this is another reflection that I can no longer deny that I am a cancer patient.  I don't want to feel "sick" and weak, and I feel like this will be a reminder.  I have also had plenty of tears as I sit and think about "feeling pretty" for Sean.  I don't want him to see me sick all of the time, I want him to be able to get away from this "sickness" sometimes, god if I could get away from it in a second I wouldn't hesitate.  I am worrying that I won't be pretty on my wedding day, the day that I want Sean to be able to look at me and actually feel my prettiness walk down the aisle.  Now I am concerned about having to wear a wig and a prosthetic bra b/c reconstruction won't be completed by next September.  Sean is awesome and reassures me that, I am the ONLY person who is even concerned about the pretty factor, and he just wants to get married....chicken cutlets in my bra or not!  I can't say enough how much I love him, I feel we are truly partners and this process so far is simply validating that for us. 

So until I start chemo, watch out for glittering bows, dresses, and over dramatic lipstick baby! 

I know this may be shocking...but I don't know everything

I am just going to put this out there.  Despite a graduate degree and my counseling experience, I have no idea how to manage all of my emotions and thoughts these days.  With that being said, my emotions can change several times within and hour or even a conversation.  It would be unfair for me to expect others to know how to handle or speak with me, when I don't even know how I feel from moment to moment.  So I will be forgiving with everyone if everyone will forgive me.There will be some days that I will need you to be a cheerleader for me and then there will be days that I need you to just agree with me that this whole thing sucks and is unfair and give me permission to cry, curse, and possible throw a tantrum. 

But again, I just need to put this out there.  Here it is: Please do not tell me not to stress.  I will tell you right now I am going to be stressed.  I am working on it, however, it is taking a minute for me to be opened arms to this cancer, chemo, and surgery.  I hope you think about it before you tell me,"Don't stress" now, because quite frankly let us pretend you were told that your tits will be cut off, you will go bald, and possible be sterile and just see how well you cope with things. 

Again, I can't expect people to know what to say to me b/c I don't even know how to deal with myself, I am just asking permission to "feel" in general.  Bear with me folks, I will get through this emotionally and physically bumpy road eventually. Sean and I are more than grateful for our family and our friends(who we consider our family) supporting us, checking on us, and just being present in some way with us during this journey we are taking.

I am also really trying to emotionally prepare myself for chemo.  A good girlfriend of mine was lovely enough to send me some guided imagery CDs in order to relax and open my mind and body up to this healing process versus looking at chemo like a poisonous drug killing my body.  Again, slowly but surely I am listening to these and I am trying.  However, I had someone tell me yesterday that I may be a bit unrealistic when I am thinking that I will joyously attend my first chemo treatment.  Which I thought was a good point, so now my goal is to be able to attend my first chemo treatment without going into a complete emotional breakdown and no snot faced crying!  Good goal right! 

The day I could no longer deny I was the patient

To say this whole ordeal has been surreal, cannot adequately describe the experience so far.  As most of you know I am a hospice social worker.  How is it even possible that a hospice social worker who is surrounded by the sick, dying, and death can adequately cope with her own illness while doing her own patients justice?

I was scheduled to see my oncologist for the first time on November 30th, Dr. Rabe at the Kansas City Cancer Center.  Sean and I were planning to meet there because it was in the middle of the work day.  I arrived a little bit before Sean.  Just parking in the parking lot was overwhelming and difficult for me.  To even consider being associated as a patient and walking into a building with the name KC Cancer Center on the outside was unbelievable to me.  As I walked into the building I could not come to terms with being a patient and not a social worker visiting a patient. 

As I sat in the waiting room completing paperwork I was literally shaking.  I was praying that Sean would get there soon, and I had the running thought in my head,"I don't want to be here!"  I have always been the type of girl who can appreciate some good quality time alone,(reading, shopping, or just sitting at home alone) however, since all of this chaos I have felt like I need Sean to be around. I feel like as long as he is around I am okay, we don't even need to be talking, just as long as I know he is there.  This bothers me a bit, I have never been like this and it is uncharted territory for me.  As I think about it, I think about all the patients and families I have counseled in hospice.  I think about the patients who have experienced these same feelings and I can confidently counsel them and their family that these feelings are related to the patient's fear of dying.  Again, I keep telling myself "I AM NOT THE PATIENT!", but as I sit in this waiting room surrounded by sick,weak, and bald other patient I can no longer deny that I am now a cancer patient.

Sean arrives and I am literally shaking and I manage to choke out the words,"I don't want to be here."  Sean was great, he held my hand and was a great support.  My anxiety was so high my blood pressure was 137/105 and that was with a Xanax!  We met the oncologist and she confirmed that I would two rounds of chemo, that would normally take 6 months to complete, but she wants to condense it into 4 months due to the cancer being more aggressive than originally thought. (since Nov 2 the mass in my breast has gone from 4cm to just under 8cm) She intends to utilize the most aggressive chemo treatment for the type of breast cancer that I have.  The side effects may be more intense with this timeframe, however, she is confident that she will be able to manage the nausea and vomitting with medications. At this point I was crying excessively, so the doctor allowed me to gather myself as Sean sat patiently next to me holding my hand and rubbing my back.  This sucks, this sucks for me and this sucks for Sean, there is no other way to say it.  So, hair loss, lowered immune system, side effects, fertility, and the fact that my cancer is growing quickly were all the encouraging topics discussed that day.....I could no longer deny I WAS THE CANCER PATIENT NOW!  

The rest of the breast story

So one of our first lessons in this whole cancer story came in this moment as Sean and I were sitting in disbelief and waiting for the gyneocologist to call and give us more direction.  We both looked at each other and realized that regardless if this "mass" was cancer or not, we both need to refocus our attention on our life and well-being and stop working so many stupid hours in our jobs.  These moments while waiting for the phone call will be forever in my mind, not because of the anxiety nor the disbelief, but the memory and the knowing that what Sean and I have together is real and exactly the partnership, love, and understanding I have always wanted in a life partner.  We didn't even need to exchange words, we found strength just being together and holding hands.  In those moments our partnership was validated and I knew, regardless of what "it" was we would tackle "it" as a team.  

So the phone rang, and you know when you hear that tone in someone's voice, that indicates,"this is not going to be good any way we look at it", that was the tone of the gynecologists voice.  She somberly explained to me that her nurse was diligently attempting to connected me with the first available appt. with Dr. Ballanoff, who was the best breast surgeon in Kansas City.  It was then explained to me that the "mass" was highly suspicious for cancer and that we needed to move quickly.  The conversation then moved into discussion of lumpectomy, masectomy, and other treatment options.  The tears were pouring at this point, but I sat silent feeling as though this moment could not be more surreal.  The gyneocologist appoligized and was struggling with having to tell me this news, and said, it is not everyday that I need to call a 30 year old and talk about breast cancer.  At that moment I choked out the words, "I can't really understand what you are telling me."  My graduate education and the knowledge from my work experience in health care desinagrated.  I told the gynocolgist, "At 9:00 AM I left your office thinking it could be a cyst or something minor and only had a "slight risk for cancer", and now at 1:00 PM I am being told that there is only a slight risk of it NOT being cancer."  My brain was unable to process.  As I told Sean the content of the conversation, we both stared at each other with no words to even capture what was happening.  

Later that afternoon, the gynecologist's nurse called to schedule the appointment with the breast surgeon and she says to me,"you know honey, I had breast cancer 7 years ago, and....blah, blah, blah" She had went on to say how amazing this breast surgeon was, however, I could not focus or listen to that because I was still stuck on her even mentioning or thinking I was apart of this breast cancer sisterhood already.  I will be honest in my head I thought, "bitch, I'm not in that group you are crazy."  Now looking back on that I can appreciate that that thought was my way of coping with the words breast cancer in the beginning of this whole process.  

After Sean and I sat for a bit we began making those dreaded phone calls that friends and family never wish to receive.  I can't imagine how our parents felt when they heard the news.  It made for a long afternoon.  And you would think that after such and emotionally exhausting day that I would be able to sleep. Wrong, since Nov. 2 when they found the mass I have not been able to sleep.  The magic hour for me seems to be between 2 and 3 AM.  I can fall asleep around 10 PM and then the magic hour arrives and I am up.  I tried hot lavendar baths, milk, reading, and meditation but forget that b/c my mind is the farthest thing from quiet nor having any ability to concentrate.  

This "mass" was all I could think about, but at the same time didn't want to think about.  I would wake from any sleep and cautiously touch it, in hopes that maybe it was smaller or even better, not even there.  No such luck.  I then found that showering was such a place of grief for me.  I was disassociating and wanting to detach myself from my breast all together.  I couldn't even look at it, let alone touch it.  I felt dirty and I desperately just wanted "it" gone.  

I think the waiting process was one of the worst parts so far.  The fear of the unknown was torturous.  You grieve all the "what ifs".  I was a bit pissed too, didn't this "mass" know that I have better things to do, like plan a wedding/honeymoon, than sit around worrying about my stupid boob!  Then I was getting hung up on the disease/dirty part of the mass.  I wanted it gone and it bothered me that this thing was in my body and potentially touching other "healthy" things in my body.  I probably said,"I want it gone!" over a million times in my head.  During this time my friends and family were great, and trying to be optimisitc.  However, over the last 1.5 years I have felt that something was "wrong" with my body, and various doctors made me feel like I was crazy and they couldn't find anything.  I had weight gain, night sweats, uncontrollable hives, mood swings, and lethargy, sounds like menopause right.  I know, then I began to think maybe I am crazy.  So when all my friend and family are now trying to be optimistic about this "mass", I was trying to be hopeful as well, however, I had a really bad feeling about all of this inside, but of course I kept that to myself, because who wants to invite Debbie Downer to a cheer rally.  But I knew.  


So I was scheduled to see this breast surgeon Dr Ballaoff on Nov 10th.  Again, it was the worst waiting. And again, I wanted "this" gone, so if I walked into her office on the 10th and she wanted to complete a masectomy then, I would be down for that!  Now, looking back I can see that I was definitely trying to bargin my way out of this stress/grief, I know that would not have been the most sensible thing to do, but that is all I could focus on.  And of course, when Dr. Ballanoff was collected and calm about the situation and recommended a biopsy first I was pissed.  Sean was the rational one of our team, but you know me, I feel like I need to control everything and I need action immediately, lets not pussyfoot around this thing and just cut it off!  Dr. Ballanoff's assessment on Nov 10th: the mass had a 20-30% chance of being cancer and it was measuring around 4 cm, and not attaching itself to my nipple so a lumpectomy my be possilbe.  Dr. B was confident on two things: she could get all of "it" and that she did not wish to "cut" it until she had biopsy results and knew exactly what "it" was.  So after that appt. the words "highly suspicious for cancer" seemed to fade and we focused on the 20-30%, which seemed so much easier to swallow.  However, my opionion still stood to be, "I want it GONE!"  

Here is a silver lining we have found so far.  Dr. Ballanoff is a great surgeon and can be a busy doctor to get into, but my gynecologist worked diligently to get me in asap, then Dr. B wanted me to go to Dr. Chow at Menorah's Breast Center, who is also highly sought after.  Dr. B's nurse had to work 2 days of talking with various people, including administration, to get me the first available appt. with Dr. Chow for the biopsy.  As I stood back and looked for a moment, I believe that this is a stressful time and unknown territory for us, but it seems that certain people are in my life right now because I need them and I am grateful.  I for the first time also feel confident in my healthcare professionals, for the last 1.5 years I had not, and now maybe I can relax a bit and let them do their jobs.....that's easy to say if you are not OCD!  


Dr. Chow was able to schedule a biopsy Nov 17, I would be the first woman in the office that day.  I was assured that the biopsy would be about 1 hour and pain free(due to medications).  I would be awake, the biopsy would be guided by ultrasound, and most women drive themselves home after the biopsy.  I thought to myself, I better ask Sean to go with me, and take the day off from work, just to be safe.  So here we go, ready for this!  

So I get there, Sean waits for me in the waiting room, I was instructed to put on one of those hideous gowns.  Side note: What the hell, who designed those stupid gowns, oh clearly there was no design effort put into those ridiculous garments.  I just may create a business that actually has some type of style to those things.  You feel like a lab rat in way as you are shuffled through the maze of healthcare at least you could be dressed cute with and option for some accessories right!  

Ok,  I digressed, so an initial ultrasound would be preformed and then the doctor would review and then come into the room and do the biopsy while another ultrasound was being done at the same time.  The ultrasound tech tells me that unless there is suspicious reason to biopsy the lymph nodes then they would just be biopsying the breast tissue.  I told her that while we were all here, why don't they just biopsy everything.  Here is a bit of info that I didn't know, she informed me that if a lymph node is "normal" and they attempt to biopsy the normal node then this could cause a reaction and cause further problems.  So with that being said, I had been told that, on Nov 2 when the original mamgram and ultrasound had been completed my lymph nodes were clear, so I thought there would be no biopsy of the lymph node.  As soon as the ultrasound begins the tech says, "yep, were are biopsying your lymph node." Christ!  I thought they were clear!  I demanded to see the screen....like I even know what the heck I am looking at, but she must be wrong.  Nope, there it was in all of it's stupid glory.  I bright white ring around my lymph node.  At this point I had no emotional energy to cry, be pissed, or even care.  I just want it all OUT!  I lay there and really have no feelings, I guess I felt a bit defeated, and we don't even know that it is cancer yet!  

So before the procedure starts the nurses are 100% confident that the doctor will be able to numb the breast tissue entirely for the biopsy and all will be well.  I ask to see the needle, you know my OCD has to be present in all events, to some degree.  Ok, so the doctor comes in, we go over what is about to happen...blah, blah.  I tell her that my breast is slightly tender already from the intial ultrasound,  the doctor says that women with slight tenderness may be more difficult to numb completley, but not to worry they had plenty of lanican.  Oh and they use epinephrine within the injection b/c the lanicain can burn sometimes.  I tell her I am not worried b/c I have a fairly high pain tolerance.   

And so it begins, the ultrasound tech is on one side providing the picture so the doctor can guide the needles to the appropriate site.  The plan was to take 5 biopsies from my breast and 2 from my lymph node.  The initial injections to numb the breast tissue were not too pleasant, but the reward would be feeling nothing in a few moments, I laugh to myself as I type this.  Long story short....the could not get my breast numb, even with several attempts.  After them digging into my breast with the needle I told her to stop b/c I didn't know which was worse the digging to attempt the numbing or the actual biopsy with no numbing.  I told the doctor, I was going to white nuckle the hospital bed rail as well as my amazingly beautiful gown, and grit my teeth, just to hurry up and get it done!  I was proud of myself, I only had a few silent tears with my pain.  Then the biopsy of the lymph node occured, I was numb with 2 injections and that was that.  Then the nurses pushed down 2 handed on my breast to stop the bleeding, really, really, could they just get off of me already this hurts!  

Things are okay, and all the staff are commenting on my beautiful engagement ring blah blah.  And then I begin to not feel so well.  I began shaking excessively and felt extremely weak.  I had to have another mamagram before I left.  The nurses shuffled me into the room and if you have ever had a mamagram you know that you have to kind of hold onto thses handlebars and hold yourself up to compelte the image.  I was shaking so bad at this point I coulnd't stand or hold myself. Meanwhile, throughout this whole ordeal, the staff act as if they are in shock that all of this is occurring.  They couldn't believe they could not get me numb and now I appear to be declining in some way.  They kept saying,"this never happens!" Leave it to me ladies, I will surely f**#*@* this up somehow, b/c you forget, I am not normal!  

So they rush me into the seperate room and put me onto the gurney.  I am shaking uncontrolablly, I am sweating, my blood pressure was 147/110, and the heat was radiating off of my entire body, my pain level was b/n 4-5.  As I lay there with cold washcloths covering everything but my nose and mouth, I think to myself, I am going to be really pissed if I have to go to the emergency room right now.  Again, isn't it funny how my mind bargins with these tough situations.  I manage to tell the nurse to go get Sean in the waiting room.  This one hour procedure will eventually end in a three hour ordeal!  Poor Sean, he must have been loosing his mind, I had been the first girl in, and by no means showing any signs of leaving after an uneventful procedure.  Sean walks into the room with me in my amazingly glorious hospital gown, cold washcloths covering everything but my nose and mouth all while shaking uncontrolablly with a blood pressure monitor beeping with concern!  I told him to give me my Xanax out of my purse, oh and that I loved him!  

So this story ends with me leaving the biospy with ace bandage and ice packs wrapped around my chest and too weak to walk to the truck.  So in all my glory I was pushed through the waiting room of 50 plus year old women to the truck b/c at that moment I was a debilitated 30 year old....man that sucks!  Thank god I took the rest of the day off from work. I was in pain and needed to change my ice packs every 30 mins.  And I must say I am a fan of Tylenol PM!  My sister Kristan and brother-in-law Donald were in town at the time, and they ran to Walgreens for the Tylenol and some gatorade and promptly left to go to Carthage to visit my mom.  Sean nursed me back to the real world within 24 hours!  My mom was a nervous wreck, calling Sean several times, and at one point hysterically telling him to go check on me every 30 mins b/c I could go into cardiac arrest or get worse that quickly....what...really Carol, I laugh now, but at that moment I may never know, and hope to never have to know, what my mother was feeling as her daughter could potentially begin a battle with cancer.  


NOVEMBER 22, THE "C" DAY.  I had been trying to keep busy all weekend in order not to sit and cry/worry about the unkown.  We had decided with Kristan and Donald in town, before they left to be based with the Army in Germany for 3 years, we would host Thanksgiving at our house.  This would be the first Thanksgiving I would have ever hosted and I would be damned if Martha Stewart had anything over me!  That weekend I made my tablescape, made my own table runners, organized the entire house, grocery shopped, anything other than sit with my own thoughts.  Sean hibernated in his Man Cave with football and beer.  He does that, I craft, hey it got us through.  Again through this entire month I had not been sleeping and inside I just knew.  I was driving to work and the Dr. B's nurse calls and asks if I can come into the office in like an 2 hours and I should bring someone.  I requested that she tell me the results, though I already knew.  Biopsy's indicate breast cancer with metastatic cancer to the lymph node.  It took my breath away, even though I had had that feeling, if was just confirmed.  I felt as though this was too surreal.  I called Sean, my mom, Shelly, Erica, and text Kristan and Sarah.  I drove to Sean's work and we sat in the parking lot, numb and in shock!  

As we drove to Dr. Ballanoff's office I was playing that bargain game again.  I thought I could do this no problem, but the only thing I felt like I couldn't do would be chemotherapy.  As we pull in, Sean is great with knowing just when and how to throw his wit around.  He says, "what are you going to do if the doctor says the cancer was brought on by crafting?"  If you know Sean, you know he is always giving me a hard time about my Martha Stewart like qualities and he despises any type of crafting/decorating!  I needed that laugh.  

As we became informed it was clear that this was no ordinary situation and the next year was about to be very difficult.  Of course the one thing I had bargined about in my head was the chemo, and that was the first thing out of the doctor's mouth.  I lost it!  I cried and said, what about a baby, we have to have a baby.  That is all I could keep saying!  My hair, we are getting married, what about my long brown hair!  Dr. Ballanoff provided the tissues and validated my emotions and we all sat for a bit until I gathered myself.  Sean was the strong, stoic man that I needed in that moment.  However, before we could go on, I was demanding that the doctor talk to us about fertility options.  She said she believed that I may be able to become pregnant one day, they just may need to be creative on how that is done.  I just kept crying and saying we have to have a baby!  I will forever remember the strength in Sean's voice througout that entire day, he kept saying,"we'll figure this out, it will be okay."  I love him and I am so thankful for him.  And again, later I was so thankful for his appropriate timing of wit and humor,as he said,"Ashley, if we can't have kids we will go get a six pack of Chinese girls, they will give them to us because we are so tall we will be like gods to them!"  

So the plan was for Dr. Ballanoff to refer me to an oncologist, and a fertility specialist.  Overall, the plan is 2 rounds of chemo, double mastecomy, radiation, and reconstruction.  I decided to go ahead with the double masectomy b/c I can't wrap my mind around ever having to be faced with chemotherapy or radiation again, so the doctors and I have also talked about after childbearing possiblilities I will most likely remove my ovaries too.  My cancer is a lobular cancer that is driven 97% by estrogen and 81% by progesterone. Hmmmm, is it funny for more than a year I have been trying to tell the doctors I have been feeling hormonal and something was not right.  In finding out the cancer news, I promptly told the doctor that I was going to beat this and get pregnant immediately....oh yet another blow!  She promptly told me that I would be on medication to "shut down" my hormones for 5 years after treatment.  Awesome!  More tears please! 

My first emotional vent on a blog

First, more of the diagnosis story will be coming, but I was too tired last night to keep going.  And sleep is such a precious thing these days, even with sleeping pills and anti-anxiety meds it is very difficult.  I didn't sleep last night even with those things in place.

So I just need to put this out there.  All of you that know me, know that I am a very organized, controlled, okay, OCD, type A personality.  With that being said, I am really struggling with the fact my life is surreal right now, I feel as if I have no control and so many other people have control of my life. 

So here it is, please don't second guess my decisions right now.  Don't question what I have decided about my treatment or my life in general.  I only have control over a few things right now, and each beautiful little decision I have control over is something that I gratefully consider and hold onto as much as possible.  Each decision I come to I typically have to talk to 3 doctors and Sean about.  As a whole we all agree on things before the conclusion is made, none of my decisions at this point will be hasty.  This whole "being sick", "asking for help", and "not being a control freak/OCD person" is really hard for me right now, so bear with me for today! And most likely for the next 12 months:)

Okay, wow, that was good, I am glad I got all that out.  It is funny how the smallest things can trigger such emotions these days.  Again, the stress and lack of sleep are wearing on me lately.  I love all of you and I am grateful for everything, most importantly your permission to fully feel all of these emotions (whatever/whenever they may be) and know that I am supported by those who love me!   Okay more to come later with the diagnosis story.  

Here's the story

On November 2, 2010 my life changed.  I was going for a routine doctor's visit at 9:00 in the morning, which was just a blink on my daily schedule.  I was more focused on how many patients I needed to see and what was going on after work.  That all changed the moment the doctor began the breast exam on my right breast.  As soon as she touched it I knew by the look on her face that this was not going to be good.  She found the mass.  My first response was a few silent tears and then, "I'm 30, and I have not had kids yet!"  

Sean and I were planning the wedding for next September and then immediately trying for children, and now this!  I did not have this in my planner and I did not have time for a mass in my breast!  My next thoughts went to picturing all the terminally ill cancer patients that I have taken care of over the past five years in hospice.  I was in shock that this was even happening. 

The doctor initially said that maybe the mass was a cyst and only had a slight risk of being cancer. However, the doctor left the room and was very prompt on getting the nurse to schedule me into a diagnostic imaging group for a mamogram and ultra sound.  In my mind I thought,"wow, if this is just a cyst then why is the doctor so intent and quick about me getting these tests done in the next 30 mins."  I didn't say anything, I was still in shock and sitting on the exam table with that, oh so fashionable, hospital gown on.  

As I left the gynocologist's office she said, "worse case scenerio we will get you connected with a breast surgeon to have the mass removed"  I got in my car and drove to the diagnostic imaging building, all while in shock, snot faced crying to Sean and my mom on the phone....sounds safe right.  Sean offered to meet me there, I said, "no, I will just be crying while my boob is being smashed in a shelf, just meet me at home." I will say both my mom and Sean handled that crazy call really well.  Of all people my mom was very calm and organized with making a plan, that's what she does, that's what she is good at.  However, it is expected that Sean was cool and collected, but Carol....this was odd, but oh well, so was this morning.  

I walk into the diagnostic imaging building with smeared make-up, red nose, teary eyes, overused tattered tissues and clearly out of place.  All the other women were well over 50 years old and not an emotional basket case!  I sat in the corner of the waiting room, trying not to make eye contact with anyone and silently in my head trying the positive affirmation,"it will be okay".  I probably said that affirmation 200 times before realizing, "oh my god, I am my mother, this is totally the affirmation she would be say!"  Funny, but not a real appropriate time to laugh. 

The did the ultra sound first in hopes that the mass was a cyst and that this would be obvious and a mamagram would not be needed.  Nope.  I then had my first mammogram.  And let me just say, you hear all of these horrible stories about how they smash your boob and it hurts, blah, blah.  Really, Really, please ladies my size D girls were smashed in there with a mass included and it was not horrible at all. So pull up your big girl panties and go get your mammograms!  

I had been instructed by the gynecologist to speak with the radiologist before leaving the diagnostic imaging building and she would also speak with the radiologist and call me with a treatment plan later in the afternoon.  As I sat down the radiologist promptly said,"it's not a cyst" and I replied, "ok, then what is it".  He went on this long conversation filled with medical jargon, which he pauses to say,"do you understand?"  I said,"umm yes I work in health care and I got it, now I have some questions for you."  I asked if there was a formed wall around the mass and how much of my breast was effected.  The radiologist stated that 10-15% of the tissue in my right breast was effected and that there was no formed wall around the mass.  He said the good news was that the lymph nodes appear clear.  He concluded with,"I have a daughter your age, and if this were her I would tell her to get this taken care of quickly.  I know cancer is a scary word, so I am not going to say that, but I can't tell you what this mass is."  Awesome!  So meet Sean at home and we sit in disbelief until we get a phone call from the gynecologist. 

I know shocking right, I can't believe it either...cancer!  Sean and I are still trying to wrap our heads around the fact that I have breast cancer.  I have had several friends ask or recommend that I start a blog of my journey.  After considering this I agree that this could be very therapeutic and a great way of communication among all my friends and family.  So, I am just learning all the ins and outs of this blog site so bear with me as I mess with this thing.  I will post later how we found ourselves in this journey.