November 8, 2013

November 8, 2013.

A day I will never forget. I was taking a shower like any other day. A drop of blood changed my life forever.

So many things have happened since then, it seems like a different life altogether. What has happened?

Well, a year has passed. What does that mean? As a wonderful song from the Broadway show "Rent" puts it - Five hundred twenty five thousand six hundred minutes. How do you measure a year in the life?

I had two mastectomies, three reconstructive surgeries, chemotherapy, lost my hair and some nails along with a bunch of other inconveniences. None of that was easy, no sugar coating that, but hey- it could have been much harder. I feel blessed that it wasn't.

All of these things are minor in the greater scheme of things. I went from having cancer to being cancer free. There are no better words in the English language than "Cancer Free" when you have cancer.

So, how do I feel about it?  Let's look at this from the perspective of the year as a learning experience.  I love to learn things.

What have I learned in the past year:

• Thoughts like "Woe is me" and "Why me" have no point, waste time and energy.
• Family and friends really do lift you up and give you the ability to get through anything.
• I missed my work when I didn't have it in my daily life.  No matter how much I say I wouldn't do it if I were independently wealthy, I now appreciate how much I enjoy what I do for a living more than ever.
• Sometimes it takes a horrible course of events to get you to something you really wanted all along.  I wanted a breast reduction after all.  It just took me a major diagnosis make it happen.  That was definitely a bonus.  
• I hated making my family worry more than any other experience I had this past year.  I pray I never have to do that to them again.
• I am stronger than I ever imagined.
• I love the new me.  Scars, imperfect, whatever- it is all me and I earned it.

Fast forward to November 8, 2014

I spent this day in a much different way than I did the day a year ago.  

Last year I spent the day worrying about what I very quickly realized would turn out to be a new cancer diagnosis.

This year was a blast.  I spent the day with two of my children in New York City- one of our very favorite past times.  Just hanging out in the city for the day.  

What a difference a year makes.  

HIPAA privacy at what cost

HIPAA privacy has given us peace of mind where our personal information is concerned,  or at least - that is the theory.  

From a patient's perspective,  the first effect we saw from this complex law was a change in patient intake at the doctors office.   This was followed by more paperwork - both out of fear of non - compliance with this rule.  

That is something we have all dealt with for years now.  I would wager that few of us read any of the many privacy forms we sign every year... We sign them and move on.

This has morphed into something that I don't think the law makers ever intended - privacy at the cost of the patient comfort and peace of mind.

I am sitting in the outpatient surgical area of a hospital waiting to be taken back for my next surgical step in my reconstructive journey.   The first thing I was told when I arrived was  "no visitors".

I have been here before,  why no visitors?  Family gives me peace and comfort,  not to mention helps with the inevitable boredom that comes with two hours of waiting. 

HIPAA privacy.  

Because of HIPAA privacy,  patients are no longer allows to have visitors at their side.

This unit has beds that are only separated by curtains,  so personal information has been overheard by families for years and this had to stop.

With that need for assumed privacy - by the way,  I can hear everything but I guess that my ears don't count- here I sit,  all alone,  waiting. 

I don't think this is what they meant.

Nine Months

A lot can happen in nine months.

A lot DOES happen in nine months.

Babies are conceived and born in that time. A beautiful thing I have been lucky enough to experience 3 times- the loves of my life.

A school year begins and ends in about that amount of time.

Three seasons of the year pass by- all beautiful in their own right.

It has been nine months since my left nipple started to bleed and my life was changed forever. So much has happened in that time.

Wow, "My life has changed forever" is a very big statement. I would like that not to be true, but it is. As much as I try to push the word "CANCER" down it creeps back into my life. I am cancer-free. Why does it keep creeping back into my daily life?

Once you go on this journey, you can't hide from it- it will always be there. You will think about it every day. From looking at your appointment book, whether it is planning the next appointment or simply seeing all the ones that passed, to looking down at your scarred body- it will always be there to remind you.

I was recently on vacation in beautiful Myrtle Beach, SC. The "before me" would have wandered out to the beach and plopped down on the chair, reading my book all day in the sun. Sunburn would have been inevitable, as would the pain that followed. It was part of visiting the beach. The "after me" made sure I had an umbrella to block the sun, SPF 50 sunblock that I slathered on every exposed area of skin (and those scars, which were not exposed but just in case) religiously and there was NO sunburn. I hid in the shady area beneath the umbrella unless I was in the water. I already had one kind of cancer- I don't want another! Silly? Maybe, but why take chances?

Don't get me wrong, I had a great, relaxing time on the beach- but I was much more careful than I would have been "before".

So, where am I today in my journey you may ask? Or not- I will tell you anyway ;-)

My hair has grown back in nicely and SO curly. I am keeping it short. The general consensus is that I look best with short hair, so I will keep it. Much more gray than before, but that was easily remedied (thanks to my awesome stylist, Courtney!) Kinda makes me wonder how terrible I looked with the long hair, but whatever. grin.

My nails are almost completely back to normal. The exception is my toenails- a bit slower to grow out, but nothing horrible.


OVERSHARING ALERT- STOP READING IF YOU DON'T WANNA KNOW!



My breasts.... hmmm.... well, they are still a work in progress.

The right side isn't bad, but needs a bit of tweaking to remove some redundant skin. This kind of gives it a boxy look on the lower half.

The left side is a bigger issue. It has the same boxy problem as the right, but also is flat- like I am leaning against something but I am not. This is the result of scar tissue in the capsule that holds the implant. The fix for this is to cut out the old capsule, which is essentially all scar tissue and allow it to create a new pocket for the implant. Basically, redo it.

The hope is that the two of them will wind up looking essentially the same once we are done. My scars will become even longer than the 6+" that they are each now, which obviously isn't ideal, but it needs to be done for a better result.

My goal is to be able to look down, or in the mirror and feel like I am looking at natural breasts. That is not what I see right now. My doctor agrees.

I should point out that this is in no way a statement on my doctor's abilities. I was a very tough case having gone from such a large size before to a much smaller size now. The first surgeon had to do very large horizontal incisions which has made this a rough road for all of us. The plastic surgeon is wonderful and is letting me drive this, when I am happy, we are done.

The next step in my journey is scheduled for October 7th.

Still here!

It has been a long time,  hasn't it? 

I suppose that's a good sign- less to talk about must mean life is getting more normal.   Never a bad thing. 

So- quick health updates-

First,  I had an MRI to follow up on the enlarged spleen  and liver cysts that were seen on earlier studies.   Good news!  Spleen is back to normal.  Liver is still cyst-y (yes, I make up my own words)  but no malignancy.  Also good news!  We will do a CT scan in December to look at the liver again. 

Next,  reconstruction is ongoing.  I have had the next step in the process,  which was another surgery to remove more excess skin and to construct nipples.   Some people decide just to tattoo nipple coloring without the reconstruction,  but I opted to go with a more natural look by doing both.

This was a pretty easy surgery over all,  but I did wind up with an infection in the incision on the left side.  That pesky left side-always causing problems!  It is getting better now and should not create any lasting effects.

Assuming the healing goes well,  the next step should be tattoos to create the coloring.  There is an awesome video online showing a tattoo artist doing this for a cancer patient.  It is really quite amazing.

In the category of getting back to normal,  I made my first business trip is since all this began.  I traveled to a conference in New Orleans and I have to say,  it was great to see everyone and feel normal again.  I missed the normalcy.

Lastly... My hair,  oh my hair.   I know many women  are horrified at the thought of losing their hair for any reason,  including as a result of chemo treatments.   I never felt that way.  It's just hair,  it grows back.   I have to say though that this part of my journey has been about the most enlightening of all.

My husband thinks my super-short hair is sexy. In 32 years of marriage he never told me I was sexy in the same way before.  He always said he likes longer hair.   Who knew?  Not him!

Also- total strangers come up to me to tell me they like my hair.   It is a strange experience to walk into the pizza place or a doctor's office and have someone you don't know tell you they love your hair.   Both have happened and it is always disconcerting.   I am grateful for the compliments,  but wow!

More to come as my journey continues.

Just when you thought it was safe....but at least it isn't the cancer!

Ok, I will admit I titled this post just in a way to make sure people don't panic.

I didn't want to make people think the cancer was back. No reason to think I am anything but cancer-free. Woo Hoo!

With that said, I am still working on being chemo-free. The side effects from the chemo, that is.

In the past few weeks, I have seen about half of my eyelashes and eyebrows fall out. That was more annoying than anything- they keep getting in my eyes. Irritating during allergy season- can't tell what is "allergy-eye" versus what is bona fide "something-in-my-eye". Also not going to try mascara any time soon, that would be both difficult and probably would look very uneven anyway.

Another fun development.... The one side effect I was working hard to avoid seems to have crept up on me.

My nails.

{sad trombone}

I have lost one toenail so far and a few fingernails are lifting from the nail beds. This makes be incredibly sad (hence the sad trombone) and for some reason is just one I didn't want to have to deal with. I suppose we all have our thing, this one is mine. I do have to say, I thought it would hurt a lot more. My fingers are getting sore, but not as much as I thought they would. Time will tell how far they will go- will I lose the whole nail or will they sort of hang on? Will they all pull away?

This is sounding too much like one of those old serial stories- or the original Batman tv show.

Tune in next time for more updates! Same Bat place, Same Bat Channel!

I may be typing with my nose. ;-)

Returning to "Normal"

What is normal, really? Who knows? I don't. But I am working toward finding it again.

I have returned to work full-time. Who knew that those words would feel so good? I missed the routine of work, the challenges, the need for thinking and most of all, my work family. I really missed them during my three and a half months away.

Stamina was horrible in the beginning. Climbing the stairs to my office was more than an effort. Now, it is so much better and I don't even think about it most of the time. By the end of the day, I am exhausted and this week has been particularly tiring working the longer hours, but it is a good tired. I am thankful for it.

We all too frequently talk about our jobs with disdain and wish we could be independently wealthy and not need to work (I am a top offender in this area!). Once I was not able to work, I missed it terribly. I don't want to go there again.

Another area I am working toward achieving normalcy is in my body.

My head is starting to get fuzzy with its new hair growth. I welcome the hair back, although I didn't miss it as much as you would think. I will be glad when there is enough to keep it warm and I won't need to pop a cap on there when it gets cold. I am over these caps. On to other body parts.....

(TMI ALERT TMI ALERT!)

I had the next surgery in my journey of breast reconstruction. This was the one I was looking forward to the most, I think.

During the double mastectomy, tissue expanders were placed and partially expanded. Once my chemotherapy regimen was completed, the expansion process continued until the breasts reached the size I desired. We chose a size that would be much more appropriate for my frame and size than I had been given by nature, which is a great thing as I had always struggled with shoulder, neck and back pain due to the size.

The problem with tissue expanders is that they are 'one size fits most' or in my case 'one size doesn't fit you'. My experience with them is that they are very uncomfortable. They poke the muscles, migrate where they don't belong and are just not a pleasant experience. I was really happy to get rid of them.

The surgery I had just over two weeks ago was removal of the tissue expanders and placement of my permanent silicon implants along with removal of extra tissue and revision of the original scars. This was a much easier surgery than the mastectomies. The one thing I ran into was a problem in that I did feel ok some of the time, so I found myself trying to do things I shouldn't- driving too soon, doing things around the house, etc. My body was quick to let me know it wasn't good to do these things. Also, the left side is much more sore than the right. My scars are large, much larger than I anticipated they would be going into this, each one is around 6 inches in length. I know they will heal and look great eventually but that will take some work and a lot of time.

I am not one to worry about how things look at such a level, but I can see how some women would be horrified by their bodies after these surgeries. I have had the word 'disfigured' pop into my head on more than one occasion. I shove it right back out because I am not a finished product, but a work in progress.

I can't wait to see how this artwork turns out!

I am so much stronger than this....

"I am so much stronger than this"

Those were the words I found myself typing to my boss one day two weeks ago. Tears streamed down my face as I typed the words that summed up all the feelings I could feel that week. All of the feelings I could feel all year.

I had reached the lowest of low points in my cancer journey.

My last chemo infusion was on the 10th of March. I was expecting to be feeling so much better at that point. Unfortunately, on St Patrick's Day, my body had other ideas. At the worst possible time, I found myself with what turned out to be a simple stomach virus. I will spare you the horrible details, but suffice it to say that in the course of 7 hours, I lost 4 pounds and became severely dehydrated.

I had been scheduled for blood work that day at the oncologist, so I went and hoped I could talk to them about some relief. I was REALLY sick.

The oncologist recommended that I be admitted to the hospital, but I asked if we could avoid that- I didn't want to go in the hospital. They agreed to give me some treatment in their office infusion center to see how I did with that as an alternative. I was relieved.

I spent 6 hrs in the peaceful oncologists office while they did labs, gave me lots of fluids and medications via IV. That helped the nausea and the dehydration. Once my color was better and they were confident I was doing better, they sent me home for the night with the agreement I would be back the next day for labs. We kept the IV in place just in case I needed more treatment the next day.

The following morning, my labs were within range. I had kept some food down so I was able to avoid more fluids and treatment.

Unfortunately, I had a reaction to the adhesive on the plastic bandage covering they use to cover the IV. While I have reacted to adhesives on rare occasions in the past, it has been years (since 1992) and I have had many IVs with the same type of covering with no problem in the interim. No idea why it did it now- but it resulted in a large burn on the back of my hand. Oh well, just one more thing.

I had hoped to return to work half days on the 24th of March, which brings us to that note I was typing to my boss. I had to send her a note letting her know that I would not be strong enough to consider returning to work that Monday. I felt so defeated. For the first time, I felt that illness had gotten the best of me. I was down, beaten.

Once I typed those words, cried those tears, I started to feel that defeat leaving. I just needed to be defeated for a little while. I needed to let it get me down so I could start to get back up. I know this sounds silly, but that is exactly how it felt. Once I said those words and admitted that's how I felt, I no longer felt that way.

Within a short time, I let those feelings fade away and just waited for my strength to return. Each day that went by once I could eat a little more, I got a bit stronger. By the following Monday, I was a whole new person- almost back to myself.

That Monday, I spoke to the doctor and got approval to begin working on the 31st. Just half days, but it is a start. Sitting at my desk is a sense of normalcy I haven't felt since mid-December.

I missed it terribly. I am glad to be back!