Angry

I am angry today. I have been thinking about Sarah, and all she went through as I sent her story off to the 15-40 connection.  They are an organization that helps young adult cancer patients/survivors.
I am angry that she had to go through the experience of having cancer.  I am angry that life isn't fair.  I am angry that some people are mean, especially if their meanness is directed at my daughter.  These angry days do not come as often as they used to, but they do still come.  Hopefully I will snap out of this angry mood quickly!

I will never forget Sarah's story, in case you have, here is a recap.  Remember, the moral of the story: Know your body, if you don't feel right go to a doctor and don't stop until someone listens!

Sarah’s story:

 In 2011, after Thanksgiving break, my 19-year-old daughter, Sarah, went back to college to finish the first semester of her sophomore year.  She was focused on final projects and exams, determined to do well. She called us several times complaining of a stomachache and stress.  There were times when she was so upset, even her dad couldn't get her to calm down, we attributed those outbursts to the stress and planned on having her talk to someone over winter break.  The first weekend in December, Sarah called and said her stomach and head really hurt, we told her maybe it was her appendix, and she should go to the emergency room and then call us.

Imagine, at the time the worst thing we could think of was appendicitis!  Sarah called us and said the hospital did all kinds of tests, including blood work, a pregnancy test, and a cat scan of her abdomen.  They couldn't find anything wrong and sent her back to school.  I went to see her the next day, took her to lunch, gave her a pep talk and headed for home, she seemed no worse for the experience.  One week later Sarah babysat for her cousins and had a great time, when she got back to school she felt nauseous and vomited.

She felt sick the next day, but thought she had picked up a little bug from the cousins, finals started that Tuesday, 12/13/11 and she was headachy and stressed.  Being my usual helicopter Self, I made the necessary calls, got her out of her exams, and prepared to go get her that day. True to form when the Dean of students called to let her know she was excused until after break, my little fighter told him, "no way, I am not waiting, I do not want to study over break, and I will take them now,” so much for mom's help. Sarah’s brother Greg picked her up on Friday 12/16/11 and they headed home, looking forward to a fun winter break.  Alas, Saturday came and Sarah was again not feeling well, so instead of relaxing, she went to her first of many doctors’ appointments.

A tired, stressed out 19-year-old goes to the doctor; she says she has a headache and feels nauseous, he says flu.  As the symptoms continued we paraded Sarah to a host of other doctors: orthodontist for possible TMJ, psychologist for crankiness, back to primary care, this time they said strep, and did blood work for mono and Lyme at my insistence; then onto the gynecologist, we thought maybe her hormones were out of whack.  Through all these attempts to figure out what was wrong, Christmas and New Year's came and went, and poor Sarah basically slept through it all!! Finally on January 3, the primary care doctor called and said that Sarah had Lyme disease and a prescription was being called in to the pharmacy.  Finally, we knew what was wrong; Sarah would take medicine and would soon be well!  Still barely eating and vomiting, Sarah took her meds and kept on sleeping. The next afternoon, Greg noticed that Sarah's pupils were dilated, when I looked it seemed as if she was crossing her eyes, so off to the eye doctor we went.  While examining Sarah's eyes, the doctor noticed swelling behind her eyes and a change in her vision, since she supposedly had Lyme disease, he called an infectious disease dr. and got us an appointment for 9am the next morning.  The ID doctor was not convinced that Sarah had Lyme, and was considering doing a spinal tap, until she checked with the eye dr.  After hearing his findings, she immediately called a neurologist and set up an MRI appointment for that same day. All Sarah wanted to do was sleep, but we dragged her to "1 last appointment," famous last words!  The MRI was scheduled for 2 pm, it was an open MRI, so I stayed with Sarah, and we were there until 3:30 pm.  At this point none of us had eaten, we were all tired and cranky and just wanted to go home!  At 3:45pm my husband’s phone rang, and our lives were changed forever!  We were instructed to go directly to Overlook Hospital where the Neuro team would meet us.  I think we were both in shock at that point, we went through the motions of getting her admitted: Neuro Critical Care, our baby was really sick.  Later that night, after Sarah was hooked up to several monitors, and tests were scheduled for the following day, the reality started to sink in.  I stayed at the hospital with Sarah and my husband went back and forth.  Our days were filled with fear, hope, and anticipation as Sarah had test after test to determine what the mass on her brain was.  After Six days filled with 2 MRI's, a cat scan, a burr-hole biopsy, an EEG, several neurological evaluations, and more blood work then I can count, we went home armed with steroids and anti-seizure medicine to await the pathology reports.  On Monday 1/16/12 we got our answers, we headed back to Overlook Hospital, this time we were instructed to enter through the Carol Simon Cancer Center, I will never forget the look on my daughters face as we stood in front of those doors, she just stopped, looked, and said, "You never told me that I had cancer!"

Sarah was diagnosed with Primary Central Nervous System (PCNS) Diffuse large B-cell Lymphoma, (cancer in her brain).  This cancer is extremely rare, and almost unheard of in someone her age, most patients are well over 60; therefore going the pediatric route was not possible.  We went to the Cancer Center at Overlook Hospital, as well as to Sloan Kettering in NY; Doctors at both facilities recommended a regiment of chemotherapy.  We chose to stay at Overlook Hospital.  Phase 1 lasted for approximately 4 months, with 4-5 days out of every 14 spent in the hospital receiving the treatment, of course there were also many "outpatient" treatments/tests done as well.  There was so much information to digest, Sarah was very sick, treatment started immediately.  Although we were able to see a fertility specialist, there was no time for anything to be done.  Sarah had a port inserted in her chest to facilitate the treatments.   After her first treatment she was given Neupogen shots to increase her white blood cells in preparation for stem-cell collection.  We had to plan for Phase 2, the stem-cell transplant, before even starting phase 1.  I kept a notebook full of all of Sarah's medical information with us for every appointment; it filled up fast and was extremely helpful. The doctors and nurses were very impressed.  Sarah made it through phase 1, and went on to have her stem-cell transplant.  There were many emotional outbursts as she tried to comprehend what was happening to her. Over the span of 1 year, my beautiful girl was subjected to numerous tests, needles and treatments; she lost her hair and the steroids made her puffy and a little crazed.  Sarah had to miss 2 semesters of college, which was unbearable for her to deal with.  I am proud and happy to announce that Sarah was able to begin school again in January 2013.  She still has MRI’s and blood work every 3 months, but is doing well. 

This all came about so suddenly and unexpectedly that we as a family are still trying to digest it all.  

I now know more about cancer, drug regiments, medical tests, etc. then I ever thought possible.  Cancer is a horrible, life altering disease; but I am proud to say that my daughter fought her way back to health and is a stronger more determined young lady for the experience.

January 6, 2014 2 years and counting......

"Good morning Mom, do you remember what happened 2 years ago today?"

Yes Sarah, it is a date I will never forget........
We started that fateful day with an appointment with an infectious disease doctor, as we had been told Sarah had lyme disease.  After a look at Sarah's crossing eye's the night before, our wonderful eye doctor insisted we investigate further.  In our quest for answers, Sarah was finally sent for an MRI.  As we were getting back in the car, we got "the call"  go straight to Overlook hospital, a Neuro team is waiting.  The journey began; tests, scans, biopsy, more tests, IV steroids to control the swelling in my baby's brain.  I sat next to her when she was awake, trying to calm her fears, when she slept I walked the halls, crying and praying that my child would not die.  After a week in the Neuro ICU, the diagnosis was given, CANCER, very rare, very serious, very scary!

Well, here we are 2 years later: six rounds of Chemo, too many medications to count, stem-cell transplant, quarterly scans, and a happy and healthy strong young woman to show for all that agony.


So you see Sarah, I will never forget that day, or any of the 730 days that followed, they are engraved in my memory and in my heart.  I am thankful everyday that you were strong enough to fight this awful disease, and that I was strong enough to fight for you when you wanted to give up.

Cancer changed all of us, Sarah, Zen, Greg and me.  I hope we have changed for the better, able to appreciate each other, and everyday that we have together.

Sarah's message to all:
KNOW your body, if you don't feel right find a doctor who will listen.  Don't give up until you get real answers,  your life may depend on it!!!!!

18 months cancer free!!

Hi friends,
I know it has been a while, time to fill you in.
First the super, great, wonderful news: Sarah's November MRI is clear!!!!!
She is 18 months cancer free!
At today's visit, Dr. M said he and the radiologist spent time going over the MRI's from the past 18 months.  He said he is very pleased that all looks stable, we are also very pleased.  Still have to maintain Sarah's 3 month MRI schedule, for at least another year.
Sarah continues to be busy at school, enjoying being a carefree college student.  
She is going to the gym and running and doing strength training, Dr. M is very happy.   
Doesn't she look great?

 We still hate brain cancer, tests, and any reminders of illness;
but we are oh so thankful that our girl is a survivor!

 Sarah is already gearing up for the 2014 "Relay for Life" at Ramapo College.

The "notebook" continues to grow and the bills keep on coming.
There is my box full of MRI CD's, it too is filling up.
In the last 2 years I have used up 9 checkbooks just on medical bills, yikes!!!

Cancer is very expensive $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Sarah's smile, PRICELESS :)

                       

New website...

Is My Cancer different ? New website with lots of great information, hope you will check it out.

In the mean time...

We are approaching the end of Sarah's first "post treatment" year, she is due for an MRI in 2 weeks.  I have been doing a lot of reminiscing, so much has happened this year that I am thankful for.  Sarah is  at school finishing her first semester at Ramapo College; doing well and looking forward to enjoying summer and all of the activities she could not do last summer!  She participated in Relay for Life and raised a lot of money, this was a very positive and empowering experience for her.  Sarah has made some good friends at school, and is looking forward to living with them in the fall.  I am so proud of her, and thankful for her continued good health.  I am pretty certain that the MRI's will continue at 3 month intervals for at least the next year, Sarah is not thrilled by the prospect, but I welcome the reassurance that all is still going well.


In the mean time, tomorrow I will be putting my nurse's uniform back on to take care of Zen after he has hand surgery, again!  This is the third time  he has to have hand surgery, this time it is to remove a tumor in one of his fingers.  The surgeon is confident that it will be benign, I hope he is right!  Poor Zen has been looking forward to this golf season, since he did not get to play very often last year.  Almost forgot to mention that along with the hand issue, he also has a torn muscle in his leg and is on crutches!  Hopefully he will have a very speedy recovery, and be back on the golf course and in the kitchen cooking soon, for all of our sakes.

Wish us both, patient and nurse, good luck tomorrow, we will need it!
M :)

One Year Ago Today.....

My darling daughter, wow one year ago today we entered Robert Wood Johnson Hospital, scared but hopeful! I read through some of my blog posts from those first few days, they made me cry.  I am so very proud of you and all you have accomplished since then.

I posted this comment last year, "This horrible cancer is like a thief, robbing my daughter of her health, youth and innocence; she is the bravest person I know. Keep fighting Sarah, I know you can beat this; there is a beautiful future waiting for you. Sarah has always risen to a challenge, I am confident that she will find something positive in this horrible experience, and make the world a better place. Together, we will get through this, one day, one hour, one minute at a time."  

We did make it through that horrible time, and you are still the bravest, most determined person I know.  Keep up the good work sweetheart, you are already making the world a better place with your big heart and beautiful smile.  :)


Here are some inspiring words:

Reflections.......

Wow, it is February 25, 2013!  I have not posted in 2 months, where have I been?  Physically, I have been either at home, or Saratoga Springs, NY.  I spent 2 weeks in January with my mom when she had shoulder replacement surgery; she is amazing and doing very well, I am sure she will be back on the tennis court in no time.  Mentally, I have been in recovery mode, spending time reflecting on the past year.  I don't really know how to describe or explain what I have been feeling, but enough time has passed for me to give it a try.  So here goes.....

Sarah's illness came on fast; there was no time for thinking, only action.  Everything we did, we did with one purpose, saving Sarah's life!  The very real possibility of losing my child to cancer was unreal, unbelievable, unacceptable, and painful in a way I did not know existed.  Our lives were taken over by Cancer; it was the first thing I thought of every morning, and the last thing I thought of every night while I tried to sleep.  For my baby, it was a year of hospital stays, treatments, blood tests, scans and fear.  Sometimes my family was strong, we held it all together and supported each other, and many times we fell apart; each of us overwhelmed by our own fear and pain.  Sarah's stem-cell transplant was the ultimate test of faith for all of us.  Sarah was so sick, and so scared;  Zen and I felt helpless, we could not make her pain go away.  Then all at once it was over; not the fear, that will always be with me, but the treatments, weekly doctor visits, and day to day dealings with cancer ended, Sarah entered the "surveillance" stage.  Now we watch; Sarah will have an MRI,  blood work, and doctor visit every three months for the foreseeable future.  Now comes the business of moving on, getting over the past, and living a "normal" life.  I have to say that Sarah is living life with a positive attitude that is inspirational.  She is back in college, taking a full course load, making friends, becoming involved, and doing very well.  Cancer will always be a part of her, but she is determined to not let it define her.  My daughter is strong, brave, determined, and beautiful in every way.  I am proud and privileged to be her mom.  My goal is to follow her example and to get on with living, post cancer.  

I would be remiss if I did not tell you how amazing Sarah's medical team is.  These doctors and nurses are honest, compassionate, caring, knowledgeable and dedicated professionals.   They saved my daughters life, and I am eternally grateful to them all.

Cancer takes a monumental toll emotionally, physically, and financially on all who fall prey to this powerful disease.  I pray that someday a cure is found.

100 Days

Today marks 100 days since Sarah's  stem cell transplant!  Monday she had her 3 month follow up MRI, and today we got the results.  Everything looks the same, which is great news.   Sarah can begin to drive again, and ease back into school by taking 2 online courses.  She of course wants to go full steam ahead and jump back into a full schedule, but that is not realistic.  Sarah does not have to go back to the oncologist  for 6 weeks!  She will have another MRI in 3 months, in the mean time we need to schedule a neuro consult, and cognitive rehab.  I wonder if we can get a 2 for 1 deal, I could sure use some cognitive rehab;  my memory is lousy these days, or maybe I just have way too much to remember.  After Sarah's appointment, Greg joined us at the Cheesecake Factory for a celebration lunch, we have a lot to be thankful for!  This afternoon both kids finalized their schedules for school, and paid their tuition; we are moving forwards, one day at a time!

7/31/12

Hi everybody,
Sarah and I went to get our nails done on Saturday, we were relaxing and enjoying being pampered until "that girl" came in, you know the one, she thinks the entire world needs to hear about her life.  Needless to say, that was the end of peace and quiet! But, even with all of the disruption, our fingers and turquoise toes looked fabulous!  Sunday we went to a baby shower for my dear friend Chris's son and daughter-in-law; amazing how many things one tiny baby needs!  We had a great time, and enjoyed seeing all of the beautiful gifts.  When I arrived home Sunday afternoon, I learned that my dad was back in the hospital.  Apparently he has an infection that compounded the Parkinson's symptoms, so he needed to be admitted and receive IV antibiotics, the fun just never ends.  Monday we laid low at home, I am still trying to get over a bad case of laryngitis, which is difficult with all of the "coordination" phone calls between the sisters.  Today, Sarah had a doctors appointment, and tomorrow we leave for Saratoga to see my dad, and help my mom line up some help.  Sarah is hoping to see some cousins while there!!!!  I am hoping to get an hour to run to my favorite yarn shop, the stash is dwindling!  Hey, with all that is going on in my life, I need yarn to keep me going.

Baby Blanket for Shower

Race Cars for Baby

so true!

M :)

Back From the Dark Side!

Remember when you were a kid and your mom said, "if you don't have something nice to say, then don't say anything at all."  Well that is why I have been MIA for the past 2 weeks, nothing nice to say!
Only at the lake for a long weekend, the heat and the temptation of the lake were too much for Sarah to handle, so we left early.  I did have a good time while there, especially the annual pasta making and a mom and sisters boat ride around the lake.  Brought back memories of the summers spent at our lake house when we were kids, those were happy times.  Once we were home, there were issues relating to Sarah's health to be dealt with; and let me just say that the "aftermath" of dealing with cancer is almost as painful as the actual disease.  We were all in a pretty dark place these past 2 weeks, but we are getting help and beginning to deal, and heal emotionally.  We have only just begun, but I have to believe that we will emerge from the darkness stronger, happier, and hopefully closer than ever!  That is my wish and my prayer for my family; that we start working and healing together today, for a brighter tomorrow.
:)

+60

Today is a special day, "Happy Birthday" to my sister Chris; it is also "Happy Day +60" for Sarah!  Two months and counting since Sarah's stem-cell transplant.   Yesterday's doctor appointment went very well; all Sarah's blood counts are still on the rise, and right where they should be, she is down to only 2 medications/day which is fantastic.  A call to RWJ and the transplant team resulted in the great news; swimming in a well chlorinated pool is now okay, HOORAY!!!!!!  Sarah is getting stronger everyday, seeing her smile again is priceless!!  Today we need to shop for a new bathing suit, my beautiful girl is so slim and trim that all her old ones fall off!  I on the other hand do not have that problem, cover-ups are what I will be looking for!

In other news, I went to a new dermatologist for my itchy skin rash, no definitive diagnosis, probably related to a combination of stress and heat.  Hard to believe, with the fun-filled, carefree life I lead.  At least I got a prescription for a steroid spray that dulls the itchiness.

The "Lake" emails have started, next weekend we begin our Marino Family week in Brant Lake, NY.
The entire clan gets together for one week of swimming, boating and eating!  It takes numerous emails and lists to coordinate who brings what, in terms of food, drinks, snacks, etc.  Every year we swear that we will be better organized and bring less, yet at the end of the week we are overwhelmed by the quantity of leftovers.  We have all sworn that this year will be different, but somehow I think we are kidding ourselves.  Food plays a very important role in this vacation,  we are Italian after all!  The annual  ritual of making homemade pasta with grandma and grandpa has become a highlight of the week for all 16 grandkids.


Looking forward to my week the the sisters, it always proves to be lots of fun, and provides us with stories that are told over and over again.  More on that later, time to finish my "lake shopping List" before the next email!
M :)

Happy July 4th!

July, hard to believe 2012 is almost half over!  
Last Saturday night we went to Chelsea's Graduation party,(down the street) it was a great party, so nice to see friends and catch up.  Seeing Greg and the boys together, all grown up and drinking beer brought back memories of them all as kids going to school and hanging out at each others houses.  Chelsea was 2 years old when we moved into this house, now she has graduated high school and is heading off to college; where has the time gone?  Sarah looked great, and was happy to be out of the house, visiting with friends.  Ever since the doctor said she should postpone going back to school until January, it is like a weight has been lifted.  No more pressure; she can take her time getting better and stronger with out worrying about keeping up with school work.  It is great to see her relaxed and enjoying herself again.  


I have been trying to focus more on myself, and my health these days.  All of the research I have been doing has convinced me that what you eat truly makes a difference in how you feel, and how much energy you have.  The old adage, "you are what you eat" has really hit home.  Unfortunately, my family is not so anxious to join me in changing their diets, and switching to healthier food choices.  My biggest objector is Greg; just the thought of healthier food sent him to the grocery store for corn-dogs, french fries, and Hot Pockets!  I hope he gets a good job with great medical benefits, he is going to need them!!


Yesterday,  Sarah and I went to Short Hills Mall with Zen to look at Mac laptops since my old Mac desktop is on its last leg.  My computer is running on an old operating system that is not capable of upgrading to the most recent software applications.   As always, the Apple store was crowded with customers, but we were still able to test out the options, and agree on a Mac Book Air.  Now it is up to Zen to go back and purchase it!  


After the Apple store, Sarah and I went to the Clinique counter at Nordstrom's, to see our friend/salesperson, Amy.  She was happy to see us, especially Sarah, we were treated to makeovers, and left looking and feeling great!


I have been meaning to tell you all about some of my favorite websites, have fun exploring!


ravelry.com --for knitting/crocheting
etsy.com-- for unique hand-made items
pinterest-- for everything
wellnessmama.com
crazysexylife.com--Kris Carr- amazing cancer survivor!
thewelldaily.com




Happy 4th of July
Maria :)

Home Sweet Air Conditioned Home

We had a great time in Saratoga, it was great to see my parents, sisters and some of the kids. We had fun making dinner together, catching up, and planning for our upcoming trip to the lake. Last night we brought in Thai food from our favorite restaurant, that was a treat for everyone! Although my parents home is air conditioned, their idea of cool is different than mine, I was hot and my dad was walking around with his polar fleece sweatshirt! Thank goodness when we got back to 97 degree NJ, Zen had the house nice and cool! When we left Saratoga, I once again fell for " you drive first mom, then I will drive". Silly me, I should have known when I pulled up to the gas pump and Greg just looked at me, seriously, he thought I was going to pump the gas! After completing that simple task, my darling boy proceeded to sleep until we reached NJ,(2hours). Sarah, who was wide awake for the entire trip, informed him that she was taking over the front seat from now on! I am glad we got away, it was a fun few days, and it did Sarah a world of good, she looks great! That's all for now, night all.

Road Trip

Greetings from Saratoga Springs, NY. Sarah, Greg, and I decided to visit mom and dad for a few days. We arrived on Tuesday afternoon, joining Chris, Chrisopher, Kathy, Annie, and Sammy. Sammy couldn't wait for Greg to take them all mini golfing, or as Sammy called it, "obstacle golfing." Today the boys went swimming and to the driving range, while the girls and I went shopping. Sarah took some great pictures down at the lake with her new camera; Annie was her model. Chris, Kathy, Mom and I all made dinner together, which was a lot of fun. Looking forward to another relaxing day tomorrow, and a visit to the local yarn shop, which is one of my favorites! It is nice to have a change of scenery and visit with family!

Monday

 Hi everyone, 

On Friday we made a trip to Montclair University to check out Sarah's options 
since she can not go back to SHU until January, we decided not to decide yet!  
She needs time to get stronger, so she will most likely stay on medical leave, 
maybe take an online course, and reevaluate all of her options.
We had a quiet weekend at home, staying in and staying cool!!!  
At least Sarah and I stayed in, the boys played golf.  
Greg also went bowling on Sunday, he is becoming quite the bowler,
heeven got his own shoes!!  
I have been knitting like crazy, trying to finish up my "works in progress."  

Finally took some photos today, none of the "professionals" were available, 
so blame the quality on me and my iphone.

shawl 1

shawl 1 (back)

shawl 2

doll

Summer is here.

Hi all, trying hard to stay cool, summer arrived in full force yesterday! Monday we went to Connecticut, and it was a beautiful day, not too hot and no humidity, just the way I like it. We saw my mom and dad along with my sister Donna and her family; it is always great to see them. Family, especially the little ones, are always great morale boosters. Tuesday I visited with my dear friend, Chris, our busy lives have not given us much time to get together, it was great to see her and catch up. Wednesday was a doctor day, Sarah saw Dr. M at Overlook Hospital, great news, her blood counts are all going up, we don't have to go back for 2 weeks! Now we need to fatten her up a little, and work on improving her mood; she is just starting to process and deal with the affects of her illness. She has been through so much, but my girl is a fighter, I know she will come out of this stronger than ever!! Today we had a great visit with Sarah's " little" sorority sister and her mom, looking forward to seeing them again soon. I am now sitting in my favorite chair with 2 fans blasting, along with the air conditioner, I hope tomorrow is a little cooler! Time to get back to my knitting, but first, I want to wish all of you a happy, healthy, and not too hot summer :)

The Middle of June!

Is it really the middle of June??  Did we have a Spring?  Summer is here!
Wow, time is flying by, it was just Monday morning and I was sitting here at my computer, thinking about the week ahead, and now it is Saturday!  Let's catch up: Monday was a day of finishing up the laundry, cleaning, etc... Tuesday we went down to RWJ for Sarah's MRI and blood work, since it is an hour drive each way, that took up most of the day.  Wednesday morning I went to Quest Lab in Parsippany for my blood work, in preparation for my yearly physical which is next week.  I am finally catching up on my own doctor visits; last week I went to the dentist, which was long over due by several months, next week primary care doctor, next month mammogram.  Thursday Sarah and I both went to the eye doctor, I can not believe it has been over six months since my eye surgery!! My eyesight is almost 20/20, amazing!  Sarah had a great report too, no more swelling/bleeding of the optic nerve, thank goodness!  After getting good reports on our eyes, Sarah and I went out to lunch and then to Michael's for some craft supplies.  We found some great puzzles that we want to get for our trip to the lake, but decided to wait until we had a coupon!!!!!  Friday we went back down to RWJ to see the doctor, Sarah's blood counts have all improved, and the MRI showed that the tumors have shrunk and all that remains is some scar tissue, YEAH!!!!   Sarah is being weaned from the transplant team, next week she goes back to Dr. M at Overlook Hospital,  she doesn't need to go to RWJ until August for her next MRI, double YEAH!!!!!  Sarah's recovery is moving ahead; slow and steady, but right on track.  Keep up the good work my warrior girl!

Aside from doctors this week, I was able to finish knitting a shawl and a baby blanket, and start working on a doll!  Knitting is my escape; I love the creative process, and the satisfaction of a finished product.  When I am done blocking the shawl and blanket, and finished knitting the doll clothes, my new photographer, aka Sarah, will take photos for me to post.

Friday night was spent enjoying the beautiful evening with great friends :)
Pizza, wine, music, and special friends; who could ask for more!

Here's to many more happy summer days and nights.

Back from the Edge!

Hi all, I'm back from the edge!
I have been feeling so down, blue, discouraged, unhappy, and over stressed the past few days, I wanted a break from reality.  Problem is, there is no way to escape from the problems in your life, they always seem to be hovering close by.  Facing the bad and looking for solutions is the only way to keep going and to move on.  I am really struggling with the havoc that cancer has brought to my family; I feel trapped by its far reaching powers.  Sarah is still dealing with the physical and emotional side effects of her illness; she just wants to be done, she wants her old life back.  Problem is realizing and accepting that the "old normal" is gone, and acknowledging that a "new normal" needs to be created.  Change is never easy, especially when you feel that it is being forced down your throat; it is also not easy to be the one doing the "forcing."  I hope that Sarah can come to terms with, and embrace the changes in her life.  Right now, for many reasons, going back to Sacred Heart U is not a viable option, but Sarah has been offered some great alternatives, so she can resume her education and still be home.  I hope she can accept this, and turn her disappointment  into something positive.  The future will be bright, and happy if she chooses for it to be!!!  Attitude is everything :)

Aside from dealing with Sarah and her future, I have been dealing with the financial burden of cancer, and it is huge!  The stem cell transplant phase of her treatment is literally hundreds of thousands of dollars. This was all pre-certified with the insurance company, by the hospital, so why are we still getting bills????
I spent several hours over many days searching on line for, and trying to decipher E.O.B's (explanation of benefits) from the insurance company; then I had to match these to the bills.  If I did this all correctly, it was worth the time, according to the E.O.B's the hospital was paid the contracted rate, and we do not have to pay the difference.  (Thank goodness, since we are still paying off phase one).  I made copies of all the statements and today I will mail them, let the hospital and the insurance company battle it out!

I have spent the past 5 months, in and out of the hospital, with Sarah, not really giving much thought to what the house looked like; this past weekend I took a good look :( :( Apparently the boys did not give the house much thought either, forget dust bunnies, we had dust elephants!!!! They have all been put to rest; I cleaned like a mad woman yesterday, scrubbing, dusting and vacuuming almost the whole house!
Zen's office and Greg's room remain untouched, hopefully the boys will pick up on the cleanliness theme, and clean their caves!!!

With any luck the weather will cooperate and we will have some sunny days ahead, without the afternoon thunder and rain.  Here's to brighter days!
Maria :)

Wednesday June 6

Greetings from my rocking chair, I am taking time out from disapointing my daughter to knit and watch TV. I am apparently also guilty of being to easy on my son, I can't win these days, someone is always unhappy. Yesterday Zen and I took Sarah down to RWJ for her weekly check-up. She had blood work done and then we met with one of the nurse practitioners; Sarah lost more weight, her counts went down a little, and she is neutropenic again. It seems every time we take 1 step forward, we take 2 steps back! Sarah is still taking a lot of medicine, the meds make her sleepy and nauseous, she doesn't eat much and that adds to the nausea; around and around we go. The nurse eliminated one medicine, and cut back on another, hopefully that will help; she also suggested that Sarah eat more protein, get some light exercise, and even spend a little time in the sun, hopefully she will listen. It seems like forever, but in actuality it has been only 29 days since the stem cell transplant, it takes an average of 100 days to recover, and up to six months to really get your strength back; I am sure Sarah will be fine, it is me I am not so sure about! I think I have reached my limit when it comes to stress and dealing with my families expectations. I think it is time for a family meeting! For now, back to knitting. :(

Another Rainy Day

It is Monday morning, and I just realized my last post was on Wednesday, what the heck have I been doing?????  Sorted through medical bills, laundry, cleaned and organized pantry, shopping, mani/pedi, took Sarah to see friends go off to prom, out to dinner, scrap book with Sarah, knit, nap, watch the Devil's lose again, listen to Sarah complain when power went out for an hour, waited up for Greg to get home from work to remind him he has dentist on Monday, watched Mad Men, slept........And here we are, back to Monday, my life is so exciting!  This week we have more doctors, dentist, college visits, and who knows what else?  Time to go wake up Sarah and give her her meds, wake up Greg and get him out the door for dentist, find my calendar and make more coffee.  :)