Chemo and Radiation

Sunday April 22

I have had 7 Radiation treatments so far. I am also on the chemo pill tarcevia (5 days so far).

The side effects from the radiation have not hit yet, they say after about 2 weeks. I am trying to use visuals to squash the bugs, when the blue beam hits the brain area I think of a bug zapper can't you just hear it frying! When the red beam is on my lung I think of a blow torch. I way I feel about this whole thing is it like a constant war trying to take over my body, Well I want to keep my body so I am keeping my fighters strong, rested, well feed, with healthy nutrients.

The side effects from the radiation has not really hit yet, after about two weeks.  I am trying to get work caught up etc, so I can rest later, because my blood counts will be low and very tired. Some of the small side effects from the pill have started, pimples...where... not stomach, not arms or legs....my face!! This is bug is going to strip me of all outer beauty and then if my worthy battle wins, I will get the outer beauty back, but a will not care about it anymore. This will be a life changing experience in all ways for the better.

I had great energy last week so I used it to get order filled and redisplay the store, which is what I love to do. Great therapy.

 www.topiaries.biz

This weekend my nephew and wife came down from to visit from DC. It was a beautiful day 80s sunny. We started with lunch outside a Taste, then hung out at the beach for a while, Keith had to take dip...burr! Then stopped to pick up a dresser for the babies room, that was mine when I was a little girl and my sons Chris's too. Then to Trader Joe's for cookout food, oh yeah we had to stop and get frozen yogurt so we wouldn't shop hungry. Then Mom made her famous potato salad! Beautiful day in more ways then one!!

Love, hope and prayers.

 If you would like to honor a loved one or someone fighting now or a survivor.

http://main.acsevents.org/site/TR?team_id=1108491&pg=team&fr_id=40935&fl=en_US&et=jKXAQbiSIocN5JKKMxINkg&s_tafId=868681

Radiation starts

Yesterday was a very long day 4 hours at the doctors, so much information and 15 new appointments, more meds. and more bad news.  I will start with the bad news, better news later.  The top lobe of my lung where the tumor is, has collapsed.  Well, no wonder I have hard time breathing.  My other lung is good and the bottom of my left is good, so that's why I can still function but I am still tired.  


On the brain, I have the A-Team when it comes to my three doctors, one is an expert in Boston.  First, my doctor for my treatments pulled up my brain scan and showed me all the spots, still just starting  in my brain and small, but quite a few. They will have to radiate my whole brain to insure they kill it all. Then we pulled up my lungs on the screen and decided to do radiation on the left lung, too. Over my scars from the last surgery, we will be zapping bug cells and goods cells, which will stop the scars from healing due to the radiation.  During the 3 weeks of treatments, I will be going through the bad to get to the better, the side affects too many to list.  My breathing and coughing will get worse before it gets better, and it will be hard to swallow.  Hopefully, we will shrink the bug in the lung which will open it up again and I will be breathing better again.  For the brain radiation, they fit you with a mask to clamp your head down.  They make the mask with a hot plastic mesh which is laid over your face for about 10 minutes or so until it molds to you and cools to harden.  I am inserting a photo because I feel like I am in the Twilight Zone.  Hate the side effects on this one.  I will loose all my hair.  I try not to think I am sick all day because I forget and don't want it on my mind all the time.  Now, it will be very evident to me all day and this one is hard for any woman.  I was blessed with long, thick hair and is a big part of me.  I said a prayer for God to take away all my vanities.



I told my nephew who is having twins in about 4 weeks, that after this, his new babies will relate to me because I will look like a big baby with no hair, a little wrinkled and a rash here or there.  Ready to be born into my new and improved life, Amen!  On top of all that news, which should shrink the tumor in my lung to help me and get rid of the brain bugs, my doctors got a chemo pill to go along with the radiation.  Sometimes the IV chemo does not do well with the radiation and the chemo pills help to keep things stable everywhere else.  So all of that is the good news.  The bugs in my brain were found by accident while getting tested for the clinical trial.  I believe that trial my not have been the answer but my guardian angels got me to have an early MRI which found this very early!!!!  Unfortunately, the MRI's  are very expensive to get since insurance does not approve having them done very often.


 My first treatment is today, one down.. 14 to go.

ALL THE PRAYERS ARE WORKING!

THANKS SO MUCH

New Chapter

As you all know, I was looking forward to testing a new clinical trial to use with the new chemo drug to start tomorrow. Well, I knew something was up, because they moved my doctor apptointment to today along with some other clues.  When I was in the examination room with my Mom, my Doctor came in and I said, "It's not good, is it?"   He said, "You did not qualify for the trial due to the cancer has moved into your brain."  I said it sure would be nice to have some good news once in a while and he said he would love to give me some.  I will start radiation tomorrow, everyday for 2 weeks.  Then another MRI to see if that was enough.  Adding chemo with the radiation will be decided soon. 


I went shopping at Sam's club, made a couple calls while I was shopping to buffer any tears in front of people.  Then I went home and cried for a bit.  I hate to cry since I get a headache afterwards and mucus build-up, which I have been trying to get rid of all the way through this. Then it was time to get back up on the horse and take control again.  Just think,  if I had not gotten so upset about the mistake the surgeon's appointment person had made, I would not have had my surgery yet!!!!  The radiologist nurse called today to schedule an appointment for tomorrow, but said she would have to call my family doctor for a referral.  I told her I would call as I am very close with my doctor and I know his nurses.  Again, my family doctor was not in today, so I talked to his nurse and said I need a fax sent STAT.  And it was done.  My best advice is get close to all of your doctors and nurses, know their names, they will be more involved with you and all that's ever changing in your medical journey.

My thoughts on today....

Even though it is hard for me to wrap my head around it (my life has totally changed in every way and will never be the same) I really do believe I have always had strong guardian angels that move things to happen.  Just think, the bug was not found after it took two doctors and three x-rays.  Then the pulmonary doctor found it and started testing and that lasted a month of "could be"... "maybe"... etc.  Anyway, my point is, I appear so healthy and I have no other signs.  My oncologist said today no one would even test for it.  I thought, I could have been a walking time bomb.  With that said, I feel maybe the clinical trial was not going to work for me anyway, but it did cause me to get an MRI (again guided to by guardian angels) which brings me to...  OK they found it early, lets kill it.  Besides, I am in Gods hands, he wants me to be healthy to get back to my happy and good life.  I must fight this with courage and strength and encourage those who have it a lot worse. 

Again I cannot thank everyone enough for the love and prayers.
It is helping me so much. xoxo



Sometimes your only available transportation is a LEAP of faith.

Clinical Trial

This is where I am at this point.

I am up to be picked for a clinical trial, which entails being examined all over again.

More blood taken today, an EKG, another CT scan, another MRI all before Monday.  I should know if I was chosen by Tuesday.  The trial are four pills I take along with the new chemo drug.  The pill would be an added bonus to the chemo with not many side effects.  My treatments will be 21 days apart again because this one will really hit my blood count low, so I need time to recover and bring my counts back to be treated again.  We are trying to just stop the growth and movement of the BUG, and then on to the next step.  I will know in about two months if this is working.  By this time the testing from my biopsy will give us more insight to help fight (and beat the crap out of) the BUG, because I am starting to get pissed!

I have to say there are so many layers to this that it's hard to see it all coming at you in the beginning.  The many, many tests, x-rays, scans, blood draws, surgeries, scopes, the insurance,(that blows through your money faster than you can imagine, everyday a bill in the mail, insurance covering less, and out of pocket more... Really!)

etc. never mind pain, coughing, and being tired from not enough oxygen.

I am not complaining, but must give a full picture, since remember I am at the begining of this battle.  Two good things, I can run my store from a far with the help of my awesome manager Maureen! I don't know what people do about work, since I have already been in this for 7 months. The other thing that helps me get through it all, is some people have to watch their small kids and young adults go thru this and much more, and the tons of elderly people that are there week after week.  So for that I can fight this as long as I don't have to watch my Mother (88) or my son go thru this week after week. 

Again thanks for the prayers cards and love, I am absorbing it all.

With all of you and the Lord by my side we will see miracles happen!!

GOD BLESS and HAPPY EASTER 

Post surgery Dr. appointment

Tomorrow is the big day!

I will be meeting with my oncologist. It seems like forever since I have been there. If I could talk to him every other day I would feel better, since new questions and thoughts pop into my head everyday, and he always make me feel positive and calm that we are going to make good progress, and are on the right path. I will be starting clinical trials next Wednesday. This means I will start new chemo once every 21 days, and will be taking pills everyday. I have no idea how rough or easy the effects will be but all can be endured with the hope of getting better. Breathing  and coughing are still slowing me down, due to lack of oxygen I become easily tired.

Again thank you for all the prayers and support.

Looking toward a brighter future.