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.

Heat Wave!

A month of temperatures over 90 degrees feels like one continuous hot flash!!
Needless to say, I have been a little out of sorts.
I spent July 6-12 at Brant Lake with the "family."  It was soooooo hot, I went in the Lake, first time in a few years.  All the planning and e-mails made for a very well coordinated vacation, lots of good food, drinks and fun!  Sarah was only able to stay the first weekend because of work, but she made the most of her 2 days and had a great time swimming, skiing, and visiting with her cousins.  We all look forward to our yearly family reunion at Brant Lake, so many memories, both old and new.  For me, the yearly trip to the lake is bittersweet, I love spending time with my mom and sisters, but I miss them even more when the week is over.  We walk, talk, reminisce, and catch up on the daily lives of our families; and then the week is over.  As all of our children get older, finding time to get together gets harder and harder, between jobs, school and sports, finding a common "free" weekend is not easy.  We have to get by on phone calls and texts until the next reunion,  "girls weekend" and that is not until October or November!

This year was our first trip without my dad, so many memories of him at the lake, making pasta was not the same without him!  On our first night, as a tribute to Dad, we set off Chinese Lanterns.  All of us sent our love and wishes to him, along with the lanterns.  It was a touching and really beautiful way to remember a great man.  Later in the week my mom, sisters and I went on a boat ride and sprinkled a few of Dad's ashes in the Lake he so dearly loved.  Brant Lake is and always will be a very special place for my family.  Rest in peace Daddy.

At home it was back to business as usual; laundry, cleaning, knitting, shopping and cooking.  I have been trying some really great vegetable and salad recipes from a website called, Oh She Glows.  I have been making a conscious effort to eat healthier foods, and have been trying to get Zen and the kids to do the same.  Convincing them to eat healthier is like banging my head on a brick wall, oh well, at least I am setting a good example!  I am also trying to use products with ingredients that are safer for myself and my family; another undertaking that is not as easy as it seems.  So many products have added ingredients that are unnecessary,  unhealthy, and possibly even dangerous; I have been spending these unbearably hot days indoors, doing research, much to my family's dismay!  I am determined to have them be healthier, whether they like it or not.  Livestrong and Wellness Mama, are two other websites that I have found to be very informative and useful.

Have a happy, healthy day, and keep cool.
I am off to get a cup of green tea and do some more research!

NEWS

Greetings friends,

Last post I was waiting for snow to begin; it started, stopped and melted all in 2 days! 
Today I am looking at the gray sky, watching the rain fall, and wishing for sunshine.

This past weekend was exciting, Sarah had lots of good news to report.
(can you guess which one is most important??)
1. Raising so much money for Ramapo's Relay for Life, she has to keep upping her goal $.
2. She has a date for Sorority Formal!
3. No more headache.
4. Awarded a Howard Honigfeld Scholarship for child cancer survivors.
5. Had a great time at sorority karaoke/dance fundraiser.
6. Date for formal = a new dress!
7. Date for formal = new shoes!
8. Date for formal = $$
9. Date for formal = :) :) :)
10. Studying for midterms :(
11. Almost spring break :)
12. Did I mention, she has a date for formal!!!!!!!

Oh to be 20 again, and so excited about life!

My weekend:
Cleaned house, did laundry, put shelf together with Greg; ( Greg started putting shelf together, Zen gave advice, Greg stopped putting shelf together, I decided to put shelf together myself, shelf not going together, Zen not interested in helping, leaves for club,  convince Greg to help again, Greg annoyed that I can't follow directions, 3 hours later damn shelf finally together, laundry room  organized),  dinner with friends, did more laundry, admired shelf, watched Downton Abby marathon, did lots of knitting, considered exercising, knit some more!

Realized that I am happy to not be 20 anymore, and decided I will never put together another shelf!

:)

another update

Since her stem-cell transplant in May, Sarah has had 3 MRI's.
August, November and February
All clear so far!!!!!!!
Next one scheduled for May 2013.

Sarah is doing well, she is ready to give back and will be participating in Relay for Life with her sorority sisters at Ramapo College this April.
Keep up the good work my darling girl!

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.

Remember Me?

Hi all, sorry I have been out of touch for so long, 2 months to be exact.
First off, let me say it has been 7 months since Sarah's stem cell transplant.  She looks amazing, and has been feeling great.  I can't believe it has been a year since this journey began.  Last December she was so sick she slept through Christmas, this year will be different, we have so much to celebrate.

October was a hard month for us, we went to see my Dad for his 83rd birthday, which ended up being his last.  It is so hard to watch someone you love slowly disappear, and that is what Parkinson's disease did to my dad.  My intelligent, witty, and loving father had been slowly disappearing over the past few years; I miss him everyday, but I am comforted by the fact that he is not suffering anymore.  My amazing mom is strong as ever, committed to living life to the fullest and being present in the lives of her children and grandchildren.   Thanks to "Super Storm Sandy," (no power for 2 weeks) I was fortunate to spend time at my dad's bedside, with my mom and sisters, reminiscing about childhood memories.  I will treasure that time forever.

November brought us back home and back to reality.  As Thanksgiving approached, we gave thanks for Sarah's health, and for all of our family, friends, and doctors who supported us through this difficult year.  Sarah's most recent MRI (November 13) showed no changes, hooray!  She will continue to have a "surveillance" MRI every 3 months for at least the next year.  Doctor M also suggested that her port remain in for the year, and Sarah agreed, she wants to avoid getting stuck by needles at all costs!!

Sarah is looking forward to getting back to school in January.  We went to the transfer student orientation at Ramapo College this week, and we were both very impressed.  Her schedule is made, all the forms are handed in, move-in day is January 21st, and classes start on the 22nd!  She is ready to go and get back to her life, not so sure about me, I know i have to let her go, but it will be hard!

Throughout all this time, I have been knitting my stress away!  Several Christmas presents are done, and I finished a few commissioned orders.  Lots more to do, so back to the rocking chair I go.

Be back soon, M

Just a few items, modeled by Sarah.

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 :)

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. :(

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