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!!!!!

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:

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.

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.  :)

Reality vs. Expectation

Good morning, at least so far, everyone else is still sleeping! Yesterday we made the trek down to see Sarah's doctor at the cancer institute, the first of what will be weekly post transplant check-ups. Arrived and found a parking space right out front,(unbelievable) checked in and waited about 15 minutes,(average) Sarah's vitals good, now for the doctor...... I think/know that Sarah expected to hear that she was DONE, better, finished, good to go, no more meds, do what you want, have a nice life, good bye! In reality we heard; you have been through hell, still recovering, keep taking meds,(you can take the disgusting liquid only once a day) No driving, No swimming,(this one was not taken well) No large crowds, blood work every week for a while, MRI in 2 weeks, keep resting, see you next week. The tears started back at no swimming! Went down to lab for blood work, the techs can't access port, Sarah did not want to wait for a nurse, so she told the tech to just use her arm, and to be careful! Done for the day, can't find Zen, he is off looking for quarters for the parking meter. Sarah is unhappy with just about everything, except the news that she can cut down on the disgusting liquid medicine. It is very difficult to think about the future, when you feel like your here and now is horrible and limited. I do understand, she is unhappy about all the things she is missing or has already missed, but hopefully she will realize that it doesn't have to be miserable, that she doesn't have to be miserable!! It's all about attitude at this point; choose to see the glass half full my dear daughter; yes some choices are out of your control, but not all of them. You can choose to be happy, choose to make the best of your time and energy, choose to show the stupid cancer that you beat it, choose to make your future bright and happy! As for me, I am choosing less stress, less chocolate, and more happiness. Bye for now, Maria ;)

Memorial Day. 5/28/12

Happy Memorial Day! Another relaxing day, with a little housework mixed in. Sarah has been sleeping a lot, and not really eating much; I think it is probably all the medicine she is taking. Tomorrow we go back down to New Brunswick to the Cancer Institute at RWJ to see the stem-cell transplant team. Sarah is really hoping that they will eliminate some of the meds. I just want to hear that she is doing well!! When we got home last week, Sarah received an acceptance letter to Montclair University; so now we have to visit both Montclair and College of St. Elizabeth, so she can compare them with Sacred Heart,and make a decision. I am so glad that she has choices, no matter what she decides. (although I do have an opinion, but I'll keep it to myself for now). Anyway right now I am just anxious for tomorrow and the doctors appointment. Happy to report that my dad is doing well at home, happy that mom is getting some help so she can get out with out worrying. The entire Marino Clan is looking forward to a happy, healthy summer and our family vacation at the lake. Maria :)

There's no place like home.........

Sarah was released from the hospital yesterday morning!!!!! After a visit from the doctors, Sarah was once again told she could go home, none of the tests showed any kind of infection or problem that needed her to remain in the hospital.  We arrived home in the afternoon, unpacked, and just relaxed and enjoyed being HOME.  Today, Sarah slept a lot, the medicine she is still taking makes her very drowsy.  She ate some dinner, and is now looking forward to watching the Devil's play the Ranger's on her very own TV!
I rested today , and finished reading the Fifty Shades trilogy, I have to say I really do not understand all the hype.  It is 2012, I would like to believe that young women today have more choices and self-respect than to submit to a handsome man, let alone the first one they date!! (Got that daughter of mine)  Anyway, it is great to be home, I think my knitting mojo is back, the creative juices are flowing, can't wait to find the perfect pattern and get started!
maria

Happy 20th Birthday Sarah!!!!!!!!!!!!!!!!

May 23, 1992 at 3:24pm my beautiful baby girl arrived via c-section, after more than 24 hours of labor!! She shares her birthday with her cousin Nicole, twins, 8 years apart. This is also the day that Aunt Donna graduated from college. Today we are celebrating at the hospital, the nurses have been wonderful, they gave her balloons, 2 penguins and a cake! Greg ate most of the cake even though it wasn't chocolate. Sarah received lots of cards and well wishes. We decorated the room with her cards, it makes it so much more cheerful. Although Sarah is not at all happy about being back at RWJ for her birthday, she has a lot to celebrate. Cancer treatment done, stem-cell transplant done, no fever for almost 24 hours, blood counts good, today's cat scan, X-ray, MRI, and ultrasound all good!! One more special MRI tonight, if the results are good, hopefully all possible complications will have been ruled out and we will be able to go home, for good this time! Zen left tonight after dinner, and I am here to stay; Sarah and I are anxiously awaiting the season finale of American Idol, even though we each like a different contestant. All things considered, it has been a good day. Happy birthday Sarah, stay strong, be brave, keep fighting, you have many more birthdays in your future. Maria:)

Sick and Tired

Today is day +14, Sarah has been back in the hospital since Sunday with a fever. Zen is staying with her because I am still not feeling well. I went to the doctor today; she said I must have a virus, along with being exhausted! It is not easy being away from Sarah, but I don't want to risk giving her my bug. Greg has been taking good care of me, and Sarah is in her father's capable hands. The good news is that all of the blood tests the doctors have done on Sarah are negative and her counts are still going up. The bad news is that she is still getting fevers, and the doctors do not want to discharge her until she is fever free for at least 24 hours. To say she is not happy is an understatement, especially since tomorrow is her birthday! My baby is turning 20, where has the time gone? The past few months have been quite a roller coaster ride, we are all ready for the ride to end so we can move on to better times. I am tired of excitement and uncertainty; I am so ready for boring old peace and quiet! Unfortunately, it appears that we will be on this ride for awhile longer, but it will end eventually. Stay strong Sarah; we will celebrate your birthday and your life tomorrow, and for years to come! Don't stop fighting, you are the strongest person I know!