Starting Chemo in December 2013

oh my goodness Robin....severe is right!

I am good. My only residual issues are

1. still tight from lat flap under in the side of my Breast causing a tightness also in my ROM

2. My incisions that were injected with a steroid to help the "relax" are still red, 4 weeks later.

3 slight Lymphedema in my arm.

4. Wrestling with my weight!

Lisa, Hang in there. I think when the weather gets nice and we can get outside it will be a little easier to stop the fear from creeping in. Right now it's snowing in Maryland....ARE YOU KIDDING ME!!!!!!! Peru is coming up in 12 weeks and money is coming due so I will not be able to make Vegas in April :-(

I just googled Faith Hill. I love short hair.

Robin, ouch! I hope that clears up soon.

Michelle, I hope you get to see John. Go away winter!!!

I don't know if I'm just at that age (43) or if chemo took it's toll on my face. I've really started noticing my age, especially around my mouth. Has anyone else noticed a difference since chemo?

After Peru my next expense is my face. Before chemo I was "Plastic surgery...oh no way I'd do that." After chemo me "if the skin was just pulled back here and maybe a little eye job to raise my lids...."

Music Video Link

DJ- I heard this song today and thought of you! Not all of the lyrics, but you'll know which ones!

I'm so hopelessly behind but wanted to let you know that I am still reading along & silently supporting you all!

My party back in January really felt like some closure and more and more I'm seeing BC in the rearview mirror.  It's great.  I am getting stronger and moving on.  But sometimes, it comes blazing back right in front of me.  I'd been reading Lisa Bonchek Adams' blog since starting chemo, which happened to coincide with the big controversy in the Guardian newspaper calling her out for "sharing too much" about what it means to live with mets.  I knew she'd been declining recently but her death still came as a blow.  She was so brave, and it's so unfair!  I was trying to explain to my husband how the death of a lady I'd never met in person could hit me the way it did, but he just couldn't really grasp it. 

What I was trying to say to him is this realization that I've had that it's only an illusion that you have a "choice" about how to live out your life when diagnosed with mets.  In theory, you have a choice of fighting versus choosing at some moment in time to stop fighting and maximize quality of life by taking that trip, doing that thing, event, etc.  But the truth is, you don't know.  Whether fighting buys you years, months, or days.  Whether "stopping" normal life is the right choice.  What if you are among the lucky few who survive 5, 10, more years?!! 

Sorry to be a downer!

On a lighter note: re skin - I had the double whammy of being diagnosed with squamous cell carcinoma on my nose this fall (squamous cell being one of the "good" kinds of skin cancer).  So, I totally hear you on the skin complaints!  My skin overreacted to the Ecudex cream - according to the dermatologist he'd only ever seen one other patient react like I did - and so I've been dealing first with a bright read spot across my nose, and that's now fading, but my nose is forever breaking out like I'm 13 years old in the spot that was treated.  I've also been using a Clarisonic and I am a convert.  It really helps!

By the way, I *still* have sparse to almost-not-there eyebrows and you need a microscope to see my eyelashes.  I really hope this is going to change!  My hair is growing but so much slower than y'alls.  Weirdly, it is really dark, almost black - darker than I've ever seen it.  It's still wavy too (it used to be stick-straight).  I'm looking into getting my eyebrows tinted.  Have any of you done that?

Although we've been quiet here lately I think of all of you very often and I had to share this with "my peeps".

A friend texted this to me that is going through a challenging time with multiple myeloma. She is going in for a donor stemcell transplant. We were housemates in college and lost track of each other. She and another room mate called me about a month ago. I told her about my Cancer journey then she proceeds to tell me about her cancer journey. Hers more serious, they initially gave her 6 months to live. She already had chemo, now this transplant and will be in Sloan Kettering for 1month. We laughed and talked for a long time. I sent her the coloring books, like you do robinlk, for something to do while in the hospital, most time in isolation! She lives 5 hours away and cant see many people due to low I immune system. Cancer is so complicated and crappy. bUt this cartoon is great none the less o

Prayers for your friend! I believe Kimie and I are sliding in sideways the past couple days! She posted about a hangover, and I am typing 3 beers to the wind! LOL! Those books are great! I am happy you shared them with her! Here is my latest...

Hello all you beautiful hungover friends!! ha! Good for ALL OF US getting out and enjoying life again! omg thinking back to last year at this time, we were all pretty much a mess! Here's to life, to good times and to happiness for us all!! cheers!

Life has been busy for me....I don't have a single day off this month of March so work seems to be all i've been doing, but also been able to spend some great time with friends and family. Oh, we got a new dog! Mr. Bogart or Bogie for short. We are completely in love with the little stinker! He just turned one year old on Saturday. Poor little guy has had 8 homes in the last year. He is a pure bred Lhasa Apso and is just like our dog Lucky that we had to put to sleep. He is the most loving and sweet dog and we are so happy with him! He brings much needed life back into the house.

My daughter Kelli and I are addicted to a show on Netflix, if any of you are looking for a great series to watch, I highly recommend The Hart of Dixie. We watch it together pretty much every night that she isn't working. It is SO GOOD!

So I had an appt. last week with my MO and all my labs were really good. Boy did i have a heck of a time getting my blood drawn, all my veins in my right arm are shot from my awesome January that I had........shit that sucked.......and she ended up having to take it from a vein between my knuckles. Hurt like a Son of a bitch! But anyways, I talked to my MO about my fears and the anxiety and just feeling like i just didn't grip on everything emotionally. I am going to start seeing a shrink on the 23rd of this month.....hoping its going to help, and feeling like it surely can't hurt!

Well I must watch The Voice...Hope you all are doing well!!! Think of you all so much!

Hugs and love,

Michelle

Hi ladies - I too have been crazy busy. I have decided that I need to see a shrink to work out a few issues. I have my plastic surgery on the 7th of April. Can't believe March 13th marked one year from my last chemo.

Any of you having a hard time looking to the future beyond a year? My DH wants to save for retirement, I want to travel.... I just have a hard time looking that far ahead.

Nice to read all of your posts. Sending a cyber hug to each of you.

Kim

Hey ladies! Happy Spring!

Question, do you all get the blood test ca27.29 when they do your labs? My MO does that test every 3 months. This past month it was 14% which i think is good! Let me know....would like to see if we are all getting the same tests and so forth.

Hope you are all doing great!

Hugs and love,

Michelle

Hospital??? what???? are you ok???? what is going on? Do you need us to all jump in your pocket?

And i have no idea what this ca27.29 test is, i just see it on my lab reports when i look online.

Feel better Holli....thinking about you!

Hello ladies!!! It's been a while since I was on. So busy with full time work and full time school. 1.5 more months and I'm done with my Master's degree. I can't wait.

Holli, In the hospital again. I'm so sorry. This is enough for you. Come on!!! I'm screaming for you!! Spring is coming and these complications will go away! I know it!

Robin, I love it! I knew the part you meant as soon as I heard it. "Dancing on tables". I will be doing that again as soon as I'm done with school. And I know how you feel. Definitely go talk to someone if you need to. We've been through a lot and it gets difficult at times. I see cancer as my evil nemesis and no matter how hard I try to get away from it its always there. I can see it dancing around in my peripheral vision, always just out of sight, I turn my head to try and catch a glimpse of it and tell it to "F##k off" but it disappears as soon as I try to look at it. I feel like I'm always trying to stay one step ahead of it. I don't seem to be able to feel settled. I bought a cute townhouse and fixed it up, that didn't work. I have a great new job, that didn't work. The only time I feel like cancer isn't chasing me is when I'm with my family. So my goal is still to move to Colorado to be with my big sister and her family. Hopefully within the next year. The trick is getting a job there!

Kim, I hear you about travel. I am already looking at my next trip after Peru. I am still investing for retirement with my work retirement because I know I should and this sounds absolutely horrible, I do it just in case I'm around for retirement. But as for adding to my savings account and an additional IRA like I did before cancer. NOPE!!! Whether I have five years left or 45 I WANT TO HAVE FUN!!! I don't mean to sounds negative or morbid, but we live with a new reality…that's just a fact. Maybe our outlook will change as we get farther from this, but it's still so fresh and we are all changed and everything looks different. So right now I'm not worrying about retirement. Wrong?….maybe. Do I care?…NO!

Crazywabbit, my breast still get itchy from radiation and it's still tender.

I broke up with "rock hard chest guy". He was a great "How Debbie got her groove back" guy, but not a great long term guy. He was very nice but very much about himself. I didn't even shed a tear. The one thing I've learned over this last 15 months is life is too short to settle for less than you deserve. And right now I want it to be about ME!

PS. MY KNEES STOPPED HURTING!!!!!! WOHOOO!!!!!

hi girls, quick check in. Heading to Las Vegas tomorrow for a week. I'm doing well. No appts, test etc until may8, next appt with MO. Love all the updates for everyone. DJJ, holly, Michelle, barb, Kim, kimie, jodi, Robin, oranje, jbokland. Let's keep it up. Funny how I actually miss "hearing" from everyone. Some of you may have seen this picture on fb but I'll post again. My new hair style. Curling iron use is totally new for me. They had to teach me. Bringing curling iron to vegas next week, will try. Lol. Anyone going to be near Vegas please pm me!! Come!

loving your hair Lisa!! Gorgeous!!

Jbokland - what is going on with your shoulder? I was diagnosed with a frozen shoulder. Everything was getting better then in December it seems like my ROM was decreasing. Seeing an OT.

jbokland - I'm so sorry. I know how painful it is. I'm seeing an OT that's working on my LE. She is helping with my shoulder too. She's even done some "cupping" on the back of my shoulder. It has seemed to help a little.

Ok... Going back to gym tomorrow after a 3 week hiatus due to hospital stay. Really nervous and kind of dreading it. A little depressed too since I know I've probably lost some strength and stamina. Still short of breath... But I've got to start back. My physical and mental health kind of depends on it.

Had a sleep study done. Waiting on results. Will post my blog post about it.

Hope everyone had an awesome Easter!

The "NO" sleep study

posted by Holli on Friday, April 3, 2015

So how do you observe the sleep habits of the human being? Well the answer to that on paper is a sleep study. However, I think it should be renamed the "NO" sleep study.

You are essentially hooked up to about 1 million wires. Okay so maybe I exaggerated. You're hooked up to about 1000. But seriously, I had wires attached to my scalp, my legs, my chest, and bands around my waist and chest, and a tube in my nose that went over my top lip. Then they say good night and sleep well. Seriously? You expect me to sleep attached to all that apparatus?

Then… Comes the best part. Once you finally fall asleep, the tech comes in and wakes you up at 5:30 AM. "Time to go home".

Wait...what? I just fell asleep!!

So I don't know what is going to come of the study. I don't know if I have to go back to do a second one? The tech said I only had one short REM cycle and that was towards the end of the night. She then said my O2 Sats stayed above 90 most of the time. Well yeah, I was awake most of the time.

So my pulminologist is aware that I did the study and my primary care doctor is aware. Now I wait to see what the data says about my sleep habits.

All I can envision is Anna from Frozen (hey, all I've watched for the past 10 years has been animated) when she wakes up on the morning of her sister's coronation!