Stay Tunned

 

Yes, I did Survive!!!!

 

 

This Friday, April 19th, 2 days before my 38th birthday I will be undergoing the second stage of my breast reconstruction for my bilateral mastectomy.  This is not where I thought I would be today.  This is not what I thought I would be doing on my 38th birthday.  I had always dreamed I would be married by the time I was 27, have children by the time I was 29. HA!  That was a dream, because I never really dated anyone, not until I was in grad school....not until I met a sweet, funny catholic boy who swept me off my feet.  I still culd have been married by 27.  But it did not happen and my dream ended. 

 

Dreams are only that, wishes we want, but they are ever changing.  I still want to get married and have children of my own.  But I might have to do things a bit different than I had hoped.  I am much older....will be 38, not in a relationship.  Don't have my period back, don't know if it is coming back (need lot's of prayers for everyone to get it to come back)  YES I want it back, haha.  It is weird to say that, I want my period back, however nice it is not to have it, there are some drawbacks to not having it.  SEX hurts like a Mother.  I love Sex, and it hurts me.  NOT Good!!  Plus, I want kids of my own in 2018 when I can have them, and with out the period I can not have them with out trying to use the eggs I stashed away.  UGH!!  And who knows if that will work!!  :-/

 

 

BUT, regardles, I WILL SURVIVE!!!

 

It's ironic I felt like posting today.  The I will survive.  April 16th  We remember Virginia Tech....We will Survive, The Boston Marathon.....we Will Survive....We will Survive this. 

 

It hurts, it is hard, we struggle.  I struggle.  We all have struggles.  No one knows what others struggle through on a daily basis.  But we all survive.  Don't pass judgement on others pain, on others issues.  You don't know, until you walk in their shoes.

 

I write this to let people know my struggles....

 

I have continued pain in my hands and feet.  Neuropothy, feeling of tightness, numbness, tingling.  I trip because I have no feeling in my feet sometimes.  I get hot flashes so bad I feel like I am burning up and my clothes get drenched ( I am only 37/38).  My boobs are in pain.  The are also very numb. 

 

I have huge medical bills still.  I pay around $750 a month in medical bills.  I will be doing this until October to pay all of them off.  It is crazy.  This does not include the premium.  In addition to all the other normal bills I have.  I have had to work through my treatment just to pay for it.  So sometimes I feel so exhausted.  I have no had a chance to have "fun"

 

I am not going to be able to go to a friends wedding in Washington (the State) can't afford it.  I needed help to pay the federal gov't for my taxes.  I feel like I am drowing....and i work non stop.

 

Gotta go to work....be there till 8pm....

 

 



A Wonderful Surprise....Cancer Free???

SOOO, the 16th of January has come and gone....and I survived the procedure!!!  I had to be at the hospital at 10:30am.  My surgery was supposed to start at 12:30pm.  It however did not start until closer until 2:30/ 3:00pm.  I meet with both Dr. Spear, Dr. Tousimis and their teams prior to the surgery.  Both Dr. Spear and Dr. Tousismis made markings on my breasts.  While waiting felt like it was a "hurry up and wait game having had to be their at 10:30.  I was ready, I was hungry and thirsty...I had not had anything to eat since midnight the night before.  People kept coming and asking me the SAME questions OVER and OVER again....checking my wrist band, making sure I knew my name and birthday. 

Finally The anesthesiologist came. I had to convince her to put the IV in my arm....she wanted to put it in my hand...NO Way was I going to let that happen.  Man they hurt there...and especially with the Neuropathy,it would be killing me.  But she had to put it in the right arm!  SMH, kinda dumb considering I am right handed. 

Another 30 - 40 minutes pass before they take me back for surgery.  I am wheeled back in a wheel chair.  I remember helping myself onto the surgery table and laying down, but that is it.  The next thing I remember is waking up in recovery.  In recovery I am in PAIN, SHARP pain, especially on the right side.  Soon my parents are allowed back into recovery with me, I struggle to stay awake.  While waiting, I get a call from some people checking on me to see how I am doing (thank you) and the nurse gives the information to the room I am being moved to.  I am coming in and out of it, as they are giving me some good pain meds!!  I am then brought upstairs to my room and my parents come with. 

Although it is late and my parents leave, I struggle with sleeping.  I am hungry.  I drink lots of water, do go to the bathroom a few times, but am not given anything to eat except some crackers due to one of the meds I was given.  I am given lots of pain meds, as I had very tight pain, especially on the right side.

My roommate was loud.  She was coughing, her IV was going off twice as many times as mine.  Mine went of each time I bent my arm, which was why I was annoyed they put the IV in the right arm and not the left.  So they taped my arm to an arm board so I would not bend it. I tried to sleep....but that really did not happen.  I think between, the beeping of my machine, my roommates coughing, her beeping machine, the lights coming on on her side, doctors coming in on my side, and the nurses phone ringing, I could sleep 20 min at a time.

By breakfast time I was hungry....but it was nasty...cold SW scrambled eggs, some type of cold potatoes (actually OK), cold oatmeal (nasty), and cranberry and apple juice.  The internists and medical staff from the teams started to come and talk to me.  I also saw Dr. Tousimis.  Everyone looked at the surgery...they said it looked great.  I was told it went great!! 

I was told....when Dr. Tousimis went in to remove the breasts she did not see any cancer and removed extra margins beyond the spot to be extra cautious.  She said I have nice skin too.  I was taught how to drain (fun) the four drains.....they look like little hand grenades filled with red liquid.  Got to come home the day after surgery.  I have pain meds, some antibiotic, and a shot I have to give myself courteous of the hematologist.  (Not to bad, since I am so used to it from the fertility treatments.)

So we have been doing the drains, emptying them out (have four of them)....pain comes and goeson my sides and some in my upper chest area.  I am tired but can't sleep. I think all is going to be good though.

Have an appointment Tuesday with Dr Spear and Thursday with Dr.Tousimis.  Should get the drains out at either of those appointments.  I will find out when I go back with Dr. Spear to get the implants put in.  (I think he said 3 - 4 months, so around my birthday). 

Oh and another wonderful thing has been happening....I have been getting these great cards from all these wonderful people through an organization called "Give a Smile Today."  It is so great to receive cards from all over from a whole bunch of people. 

90% Risk Free

New Boobies = New Beginnings = No More Cancer (hopefully)



So I have not been "blogging" in a long time.  I have not been doing anything worth you all hearing about I guess.  The same ole, same ole.  Working and trying to pay the bills.  November 16th, as you saw in my last blog was my last Chemo treatment!!  YAY!!   I have had 2 treatments of just Herceptin.  Both of those treatments went well.  No side effects from these treatments, however I am still trying to recover from side effects from my first and last two rounds of chemo.

The last two rounds of chemo left me with Neuropathy in my hands and feet.   My hands continue to get numb, tight and stiff throughout the day and night. I loose sensation in my fingers where it is hard to feel things as you normally would.  (It's hard to explain.  I can feel that it's there, but the sensation is different.)    Sometimes my hands also are super cold as well. The pain often extends up through my arm. I have a hard time bending my fingers. These symptoms are worse in the morning and when I wake up.   It really helps when I either massage my hands, have someone else massage my hands or I use a squeeze/ stress ball.  My feet also get numb, sensation is also lost in my feet (much like when your feet falls asleep from sitting on it too long), also it feels like my feet get super hot and super cold, even though the temperature of them has not changed, pain extends up my legs as well.  My ankles crack and toes are sore.

I also am retaining water.  My ankles, legs, face, and body is slightly bloated.  I have been unable to wear my shoes at times.  For one week I had to wear slippers.  I bought Dr. Scholls For Her Fast Flats.  (They look like ballet shoes, but are a little more sturdy.)  Now I can wear shoes again for most of the day, but by the end of the day my feet are swollen again and burning. 

I have been given meds for both....but it is going to take a while for them to help, more so the meds for the Neuropothy.  I was told that rebuilding the nerve cells takes time.  It could be 4 months to a year.  UGH!!! Not Fun!!

 

 

My first treatment as you remember I started to loose my hair....well, it has started to grow back!!  Yay!!  Slowly...but it is growing back.  It is so soft.  I love touching it.  I think it is like 1/4th of an inch.  A few strands may be a bit longer.  I am so ready for it to be longer.  I am still wearing my wigs.

Now let's get to the fun stuff!!  I have gone to my plastic surgeon (at Georgetown), my oncologist, my original breast surgeon, a new breast surgeon (at Georgetown), a hematologist and had a pre-op for surgery.  I had to schedule and meet a new breast surgeon because I wanted to have my plastic surgeon do my reconstructive surgery, and he only practices at Georgetown.  My Breast Surgeon only practices at Fairfax.  I like my new Breast Surgeon.  My Plastic Surgeon (Dr. Scott Spear) recommended my breast surgeon (Eleani Tousimis), also at Georgetown  (she was also just on CBS talking about the #MissUSA who is also going to have a double mastectomy.  I am also scheduled to have an MRI on Sunday at 8:45am.

 

 So the big day is December 16th.  I have to be at Georgetown at 10:30am and my surgery starts at 12:30pm.  I am having a bilateral nipple sparing mastectomy with immediate reconstruction using allerderm (tissue expansion.)  I will have to be in the hospital that night at the minimum; one night more if I need it.  The 18th, in the afternoon, I have a herceptin treatment.  UGH!!  I was told it would take at least a week for me to have tubes which need to have tubes which need to be drained.  Depending on how well I heal, I will try to go back to work after a week, otherwise I will take off more time.  I really can't take off more than a week due to 1.) Needing the money to pay all the bills.  2.) My clients needing me.  I don't want to take more than a week not seeing them.

 

While I am laid up for a week or more, my wonderful co-worker/ boss and office manager are giving me movies (Twilight and several Romantic comedies) and some great full TV series to watch (Big Love and Sex and the City).  Hopefully my girlfriend Denise will be able to come up and take care of me, otherwise my mom will be taking care of me.  I hope to be able to stay at my place, as I want to sleep in my own bed.  It would be so much better!!! While I am laid up, please feel free to contact me, e-mail me or call!!  I would love to hear from you!!

So all of the doctors appointments, the herceptin treatments and the surgery will probably max out my deductible and out of pocket payment for my health insurance right at  the start of January.  My deductible is $2,500 and my out of pocket is $5,000.   Each Herceptin treatment alone is close to $9,000.  I have no idea how much each doctors visit is going to be, how much the MRI will be on the Sunday before the surgery, how much the pre-op appointment will be, nor how much the surgery will be.  But I do know that when I stayed in the hospital last January for my migraine in the ER, the bill was over $8,000.  I am sure this surgery will be way more than that.

 

I will have to pay for my bills up to the first $2500 (my deductible), then I pay 30% of the fees until I reach my out of pocket maximum ($5000).  By the end of January 18th, I think I am going to reach that, and I have NO idea how I am going to pay it!!  I surely do not have that kind of money.   I am still trying to pay back my medical bills from last year, despite all of everyone's help.  I still have several thousands of dollars left to each one.  AYE!!  Also I am going to have to start paying my student loans, which I have been lucky to defer for a long time.  My deferment period is going to end in March and I have no extension time left.  I just want to get out of debt so that I can enjoy life and do fun things.  I want to be able to go on vacation.  I want to be able to not feel guilty for eating out.  I want to not feel guilty if I buy anything that is not a necessity.  I feel like I have to work consistently

so that I can make as much money as I can so I can pay back my bills. Money is always on my mind, and I don't want it to be.  I have the lowest cable, internet, and phone plan possible.  I eat and buy as little as possible.  I rarely buy anything new in regards to clothes or gadgets/ items.  I have not been on a vacation in a long time.  My parents pay/take me to the VT Hokie games.  I save up/ put on my credit card a trip to go see a friends wedding, but do the shortest trip possible and try to do the cheapest way I can.  Hopefully one of these days money won't be as big of an issue and.  Hopefully I can feel like I can save money and feel free to enjoy some life too.

The Next Steps

It has been 11 days since my last cancer treatment!!  YAY!!  I still have neuropothy in my hands and feet, still don't taste things quite so right, and still get an upset stomach.  But I know that will slowly get better in the coming weeks. 

I met with my plastic surgeon to discuss the steps I need to take for the whole "mastectomy/ reconstruction" stuff yesterday.  We discussed that I would have a double nipple sparring mastectomy.  Also because I was not "fat" enough I would have to have implants and have a two step procedure where they would put a expander in first called AlloDerm.  However, due to my plastic surgeon working at Georgetown and my cancer surgeon working at Fairfax I ended up adding an extra step into my procedure.  I have to set up an appointment to see a new cancer surgeon at Georgetown who will do the mastectomy.  This appointment is now set up for Dec 10th.  (Hopefully even though this appointment is that late I can still have the surgery in the month of December.)

I am still seeing my cancer surgeon this Thursday, the 29th as well and letting her know what is happening.  I am sure I will have to get scans to see what happened to the cancer, but I will update you when I know all that. 

Well that is it for now.....just lots of doctors appointments, and lots of craziness!!  I just want it to be over with....but I know, it is an ongoing process....especially with me having to go every three weeks for Herceptin, and taking Tamoxifen for 5 years.

The Final Chemo Treatment

Today I had my Final Chemo Treatment!!!  Yay!!!  These past 3 months have gone by soooo fast! I can not believe it.  I am so excited!!  Just need to get over this one week hump of super bad feelings after the chemo and I can manage the other two weeks before my hair starts to grow back. 

 

 

I have a meeting set up with my plastic surgeon in 10 days, so hopefully by the end of the year that can be taken care of.  I will also have to go back every three weeks for Herceptin, but my oncologist said there is no side effects from this and I can go back to eating and doing all those things I had to stop doing.  (Sushi, manicure pedicures, Indian Buffets, Brunch Buffets, etc)  :-)  And as mentioned my hair will start to grow back!!!  I am so excited to have my hair grow back and see what color and style it comes back as!!

 

I still need to contact my Cancer doctor to see what tests need to be run, and will do that Monday, so hopefully I can get that in before my appointment before my surgeon sees me, so nothing will mess up surgery.  I will let everyone know the plans.  I would like to start off 2013, with a FRESH start!!  Be Cancer Free, with new boobies!!! 

 

Thanks again for everyone's support!! I meet some of you recently who have supported me who are new friends and it is great!!!  Can't wait to meet a few more of you!!  A positive attitude sure has helped a lot!!  It has passed the time and made me forget about the struggles.

 

Here is to a good quick week and three week period until my hair grows back!!  YAY!!!!

 





The Best Defense is a Good Offense

This was the statement I was thinking about as I went to bed last night.  It was a bad football weekend yet again for the Virginia Tech HOKIES, which many of you know I am a proud supporter of, and always will be.  No matter whether they win or lose, I love Virginnia Tech and The HOKIES.  The Hokies Football team in the past and even now has relied on their defense and even one, two, or three really good players.  Infact at one time they had one of the top defenses in the country.  The offensive team as a whole has never been "great."  They will need to step up their game to win a game and to be a better football program overall. 

This statement can be true about life in general.  Offensive = Prevention.  If we look at doing things preventively, then on the back end we won't have to pick up the pieces so much.  If we do more ground work teaching, educating, have better nutrition, exercise, spirituality, cleanliness, vacciness, medical care, etc. people in our country would be healtier, happier and have more and better jobs.  (Not meant to be a political rant.)  Understanding at the same time that to do preventative work may be costly, more work and perhaps stressful at this time because of the circcumstances we are in.  But in the long run it could be woth it.  We have to get over hurdles and obsticles to reach our ultimate goal rather than (putting bandaids on things).  Like My Hokies, maybe to make changes they need to fire a coach or two, which may be a hard thing.  Or it might be having a losing season or two and not going to a a few bowl games, which fans may be upset about.  Or it might be about both in addition to recruiting more players training them and seeing them grow.  But if that is what it takes to build a good offense, and build a good team, then, do it for the outcome, not what pain and agony in the moment.  It's about the long term gains.  Not the immediate losses or the fears of "what ifs."

Sooo.... I say all this....as I have fears...and thoughts about what to do for the future.  On October 2, 3 days leading up to my last treatment, treatment #4, I was given some information to think about how I might want to proceed after chemotherapy was over.   (So what am I talking about you ask?)  Due to insurance reasons don't want to write specifics, but what I can say is that I have a higher liklihood of reoccurance of breast cancer than the general population in the next five years and in my lifetime, as well as a higher risk for ovarian and pancreatic cancer than the general population.  This news hit hit me pretty hard and that is why I have not written. I have been thinking about my options and talking with different people.  But like my title says, "The Best Defense is a Good Offense"   I am choosing to take the offensive strategy.  I have pretty much made up my mind, as soon as I am able to, to have a double masectomy, to lower to risk of reoccurance to the lowest it can possibly be.  I have already seen a wonderful breast plastic surgeon a month or so ago, whom I have known my whole life.  So I am comfortable with him giving me beautiful new breasts. My life is more important than my breasts, as much as I love my breasts.  But it is hard to think that I have to go through all of this and have to lose my breasts too. BUT, I want to live until I am 100.  I want to get married have children and see my grandchildren. I don't need to do that with my original breasts. 

I will try and find out more about the particulars and details about the timeline when I have my appointment with the RN who fills in for my Oncologist on Thursday.

Can I Get a Good Day?

So most of you have not heard from me in the past several days.  I have been very under the weather.  Nauseted, throwing up and headaed to the clinic Monday - Today to get meds and rehydrated, and it is scheduled until Friday.  It all started Sunday afternoon.  I was granted with a great Sat watching the HOKIES lose.  No throwing up last night, but still ubber nauseated!

So that's it my friends.  I have been sick, sleeping or well throwing up.