A new Chapter

Well, I'm doing it. I'm quitting work the end of November. My days are no longer consistent as to how I feel except I'm tired a lot more now and hurt some days. Right after I'm done working...I head to the Domincan Republic for a week. Then....the sky is the limit!!!! I'm really looking forward to it. I have hopes of going to Florida, California, Colorado, Texas, maybe Peru...heck who knows! Also I always wanted to take the motorcycle safety course and a cake decorating class. Who knows!! I'm still figuring out all the details with insurance and all that jazz, but it'll all work out...it always does!

My new med is coming tommorrow in the mail from a specialty pharmacy. It sounds like a lot of pills on an empty stomach. Half of the people that take this medication get sore hands and feet...blister. It can cause the liver to work improperly and cause heart damage.

Hello Tykerb

The lucky new drug is Tykerb. Another cellular specific medication that works similar to Herceptin that I've been on as long as I can remember now. Even though Herceptin has failed me...it still slows progression, which is why I stay on it. Tykerb is pill form, but needs purchased from a "specialty pharmacy" meaning one in the mail approved by my insurance. My insurance wouldn't approve a 90 day supply and my copay for a 30 day supply is over 50 dollars...sheesh! Lets hope it works with minimal side effects! More news to come, just not made public just yet.

Lately I feel tired a lot of the time, but can't sleep and nauseous, and can't eat. The doctor gave me meds, which make me feel more tired and difficult to get through the day, so I won't take them...blah blah!!!!

Sigh.....Sarcasm

Today if was brought to my attention that I was coming across publicly criticising one of the people I actually hold a great deal of respect for in my occupation. Now I feel disappointed in myself and didn't realize how often I made "joking" comments. Like they say, every joke has a root of being truth and this one did. I feel absolutely silly now and will from this day forth try to be more of a positive influence with my team and save the negativity for the door step!!

The life of a Mets Girl

Last night for whatever reason I was seriously sick...I think I ended up in the bathroom like 15 times. Since you all know that I don't move exactly quickly these days with my left hip being all necrotic, I fortunately brought a big bowl to bed with me.

The good news, i had a treatment scheduled for today and told the doc my predicament of the nights activities and asked for some extra liquids and he obliged.

Next week is an echocardiogram to make sure herceptin isn't damaging the good ole ticker (heart)

Two weeks is Faslodex and Xgeva- OUCH to all three shots.

I still have my cough and my hip is not any better. I'm just falling apart but maintaining my smile, of course.

My next scan will be in September...

Those that know me, know that I'm not really one to complain especially about myself. I feel myself pulling away from people, I'm afraid to make plans (for fear of cancelling them) or worse yet...keeping them and being miserable the entire time because I'm so tired, nauseous, or in pain. I hate cancelling plans especially last minute and anyone that knows me...KNOWS that I just love being social and seeing my friends. This has really made my heart heavy...I feel like such a waste. I thought I was destined for great things and now I just feel stuck struggling to stay afloat.

I love how I go to the doctor every week lately and he asks me what medications I'm on...which consist of Codiene cough syrup, marinol, lexapro, Ibu, albuterol inhaler...all as needed. My Dad is worried about me...worried about all the medications, but it's so hard. I just want to be normal so badly...I want to go about life like normal. I hate being "sick" I medicate myself to try to get through each day and live a normal life. Without work of some sort...that's it for me...I'll be giving up, be done fighting.

Then they tell me that guys are scared of the cancer...that 99.9% of guys will not stay around during it. I guess I understand...it's scary, but then again...I could be hit by a bus tommorrow on the street. Know one knows. My friends and family want me to lie to men (or just not tell them) which is the same as lying to me...omitting the truth. I hate it...it wears on my heart, but it is nice to have someone pursue you and want to be around you before they are scared of you.

My nausea really bothers me lately...all the time. My back pain on the left hand side is getting pretty bad. I thought it was from coughing, but I'm not so sure anymore. I even wake up in the middle of the night to move to my other side because of the pain...I have to consciously think to move so it hurts less....and my hip...it's still the same. Not any better....

Jenny Grimes is a fellow survivor. She had some great ideas that i'm trying out myself. That whenever she feels down about herself or her disease...she does something for someone else! What a great idea. It sure makes you feel better. I'm all about that! Friends of mine like Delores Krick...already do such things....what an angel.

until next time!
Jen

Love Endures Cancer- what a gift to find such love.

Success

Success: To laugh often and much; to win the respect of intelligent people and the affection of
children; to earn the appreciation of honest critics and endure the betrayal of false friends; to
appreciate beauty; to find the best in others; to leave the world a bit better, whether by a healthy
child, a garden patch or redeemed social condition; to know even one life has breathed easier
because you have lived. This is to have succeeded.
Ralph Waldo Emerson

Normalcy, Love, Life

It is interesting the life I live. Much different than I ever expected to be living at this point in time. I thought I'd be a consultant traveling the country telling dental offices how to run a successful business. I am called on here and there to do some consulting locally, but I'm basically tied to my doctor's office now. I make half of what I made prior to stage 4 breast cancer. I even made decent money in 2005 when I was stage 1 and went through treatment. I really never thought I'd be living at home when I owned my home in 2005, how many 25 year olds own a home? Not many, but I worked hard and saved. Even with everything I've been through I still have excellent credit to this day, not that it really matters except to my pride.

I hear of a few survivors that have found love in the midst of this diagnosis, but I believe it's few and far between. I'm not sure if men have a fear or lack strength or what it is. Or even if it's the disease that is the problem. I'm sure it doesn't help that going through menopause AGAIN (after the ooph) gives you an emotional roller coaster, so maybe I'm not the easiest person. I don't know.

Thankfully, I have a wonderful network of friends and family. I spent the weekend with them. What WOULD I do without them. They keep me going when I ask myself why I go through all that I do...what is it all for? To just slowly go backwards in life...perhaps eventually to a point of childhood when I am completely dependent upon someone? Then I look at my nephew and see that I make a difference in his life...I am someone to look up to for him...reasons like that is why I am still here.

What makes me sad

As I lay here at 1:30 am aching. My leg aches...a new pain in my side that is positional that started this afternoon. My shoulders are tight from the recent stress and my back just aches...stress, tumors...who knows why, but what really just brought me to tears is the thought of being a dissapointment. I was supposed to be the one to care for my parents and grandparents when they were to old/frail to take care of themselves. I am my dad's only child...so now what will happen to him. I worry. I'm the most responsible child of my half brothers, so who will take care of our mother, step mother, grandpa. I feel like a let down. I know it is of no fault of my own, but it was in my plans. I wanted to take care of them, make sure they didn't go into a nursing home with crappy care.

Oophorectomy

As awesome as an oophorectomy sounds and rolls off the tongue...it does create a bit of a void. It was a laproscopic removal of my ovaries and fallopian tubes. 3 incisions. Each less than an inch big.

It is now a reality that I will never have children. I would have been a great mom too. I think it's ok. Like I've said...life doesn't exactly go as planned...it's good to have loose guidelines.

I do enjoy taking trips to NYC or vacations to San Diego, Europe, etc. And it's hard enough to travel or leave home with having a dog to look after, so a child is a much bigger responsibility.

If I tell you I'd like to spend time with your child...it's to atleast make an impact in his or her life, like my nephew. He makes me want to be the best Aunt...the Aunt he'll never forget and always think of fondly. That I make him feel safe, loved, responsible, and that there are consequences to his actions. He does not enjoy time out, but it is necessary some times and important I believe. Just as important as those rides on the 4 wheeler, trips to the park, riding the snow mobile, etc.

It's weird the times that not having children bothers me. It sometimes makes me sad when I think of other people having babies eventhough I can't wait to see the baby and hold the baby because they are so darn cute and cuddly! Seems silly, I know. I do love seeing and being around my friends and their children...it really just affects me at odd times. It REALLY gets me when someone has had the joy of having a child and ALL they do is complain about it or abuse that privledge of having children (i.e being a poor parent) and we see it all the time. Or when you already have a child or two and complain about not being able to have another. All I can think is well...atleast you have one...you are blessed with one...sigh.

I think until now it was in the back of my head that I'd find a surrogate to carry a child for me at some point.

It's ok. I just try to focus on what I do have, like the freedom to come and go as I please and not worry about the ear infections, teething and just overall illness when you can't give children any medications to make it all better...you just feel so bad.

It's BAAAAACK

So recent pain in my Left Hip that was unexplained (i.e. no injury) prompted me to ask the Dr. for another scan. The CT of chest and body bone scan shows progression of the lung nodules, a new lesion on my liver, and something going on in my Left Hip/Pelvis Region. Additional scan of Left Hip shows Avascular Necrosis of the Head of the Femur in the Hip joint. Yeah, if you know what Necrosis is...it's death, so that's never a good thing.

So what's the plan? Well, surgery 1st to remove ovaries (bye bye last hopes of every having a duplicate of my genes in a little one) and putting in a mediport.


Sexy, huh? Help me come up with a good story as to why I'll have this lovely lump on my chest...it will surely be a topic of discussion. I've opted to FINALLY get one because the poor nurses are down to drawing straws every three weeks for my treatment because the years of medication and abuse has turned my veins into little fragile things :( Friday I was stuck 4 times before one worked and now it looks like someone beats me because of the bruising of all the sticks. Try explaining that all the time!

Then changing up my treatment...Remaining on the 3 week Herceptin and Zometa, but now add a hormonal treatment of 2 Buttock shots every 4 weeks. Faslodex...it sounds wonderful. It's thick and each injection takes 3 minutes to push in...Awesome. This is instead of the daily pills I used to take that stopped working.

Oh, the hip you ask. Well, who knows. There really isn't much they can do for a bone that has lost vascularity. After the surgery and getting the new treatment squared away...I'll be headed to an orthopeadic surgeon to figure that out. All I can say that if a walker or cane is in my future...It better be all BLINGED out! LOL.

I still feel pretty good, so each day I'm thankful for that and I just roll with it. I literally live for each day.

Friends, family, and work...could not be more supportive.

It's BAAAACK

I have a chest CT scan tuesday which showed a new lesion on my Liver and progression of the nodules in my lungs. Of course, my blood didn't show anything...good thing I wanted a scan for peace of mind...otherwise It'd be much more progressed....change of hormone treatment...no chemo right now....until next week...bone scan.