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 :)

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 :)

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.  :)

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!

We're Back........

Sleeping in my own bed again was great, in fact I slept so well that when Zen tried waking me at 6am, it took a minute for me to realize where I was! Why was he waking me so early? Sarah had a fever of 104.3, here we go again....... Called the hospital and doctor, they wanted to check her out, so off we went back to RWJ. Entering through emergency was not nearly as bad as we imagined. They checked us right in, put us in a sanitary room, accessed her port with ease, and did blood work and a chest x-ray in a very short amount of time. The ER doctor came in, followed shortly by oncology. Before we knew it we were back on the 4th floor in the BMTU; the good news is that the preliminary blood work was all good, Sarah's counts are sill going up, in fact her white blood count jumped from 6.9 to 16.8!! The infectious disease doctors came in and said all looked good, her fever went down below 100 and stayed down. The bad news, unfortunately once you go to the hospital, they want to watch you over night and wait for the 24 hour blood culture results. Since my back is still in knots, Sarah agreed to have Zen stay with her tonight, so Greg came to pick me up and bring Zen a few things from home. Greg and I headed home, with a quick stop to do some birthday shopping, and then out to dinner with the Scannella's, which was a nice treat since I really did not want to cook. Zen and Sarah napped, ordered pizza, and settled in for what hopefully be a one night hospital stay. Meanwhile, my dad is still in the hospital, so I am waiting to hear what is going on there. So, off to bed with high hopes that Monday will bring only good news. Maria

Home Sweet Home

Out at last, and what a beautiful day, my girl is coming home! Unfortunately, I found out that my dad had gone into the hospital on Friday night, and was having tests done on Saturday. The Parkinson's disease is really taking a toll on him, and my mom who has to take care of him. Arrived home about 2:30pm, Sarah had a snack and then stretched out on her bed to catch up on her favorite TV shows. Meanwhile, I unpacked all our things, got organized, gave the bathroom a good once over with disinfectant, and then I too flopped on my bed and watched some TV. Before we knew it, it was time for dinner, it was nice to see Sarah actually eat, and it was extra nice because we were all together! Greg entertained us by wearing a hospital mask, and blowing up the plastic gloves as if they were balloons. After dinner Sarah talked to friends and family, and then off to bed. Unfortunately she ended up with a fever, so we had to dig out the Tylenol and hope it goes down by morning. Keep your fingers crossed. Maria

RWJ. Day17---------Day +10

We have been in this room for 17 days, I think we are both going a little crazy! Sarah was up at 7:30am, she was anxious to see the doctors, it was a long wait since they don't do rounds until about 10am. In the mean time, our favorite nurse told me a secret, Sarah's white blood count jumped from 0.4 to 2.0, this is great news! When the doctors did come around they were pleased to hear that Sarah was much more alert and eating. They took her off all but one IV antibiotic, and cut back on some of the meds she takes orally; they indicated that if she remained fever free throughout the night, and he blood counts continued to rise, we would go home this weekend! Of course Sarah has decided that means tomorrow, as early as possible! Although she would have loved for them to release her today, with some coaxing she realized that they have to monitor her for another night. In the meantime, the nurse practitioner wrote out all of the prescriptions for the meds Sarah will have to take at home for the next month and the case worker sent them all downstairs to the on site Walgreen's pharmacy. Within 30 minutes they had all the prescriptions approved, packaged, and ready for pick-up; couldn't have been any more convenient. Later this afternoon, the nurse practitioner went over all the meds with me, and answered some of our questions relating to Sarah's care at home. After a nap, Sarah worked with the physical therapist on some strengthening exercises. I must admit that for someone who had received some long awaited good news, my darling daughter was rather crabby this afternoon; apparently she had a bad headache, but was afraid to say anything in case it would delay her release. Fortunately she finally told nurse Nancy, took a pill and a nap, and woke up a much happier young lady. We had dinner, got ready for bed, watched the Yankee game, and now we are ready to get some sleep and dream about tomorrow and home! My last night on a small, hard sofa bed, yeah!!!!!!!!! Sweet dreams, Maria

RWJ. Day 15--------Day +8

Hi all, Last night was a long one, basically no sleep. Sarah was so unsteady and restless, she kept getting up thinking she had to pee, I could not sleep because I was afraid if I did she might get up and fall. Today was not much better, woke with a temp of 104.8, plus she was really confused; she thought we were in Florida on vacation and she couldn't leave the hotel. She kept asking me when we were going to Disney Land! Not sure if I should laugh or cry. I just hope tomorrow brings clarity, good blood counts, no fever, and an end in sight! Have to sleep now, hopefully. Night, maria

Picc Line

What is a PICC Line and Why Do I Need It?   A PICC line is, by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice. A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices. Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement. The entire procedure is done in the patient's room decreasing discomfort, transportation, and loss of nursing care. A PICC line may requested for a variety of treatment options which include some of the following: -Prolonged IV antibiotic treatment; -IV access obtainable by less invasive and longer lasting methods; -Multiple accesses obtainable with one access line; -TPN Nutrition; -Chemotherapy;; -IV access related to physiological factors; and -Home or sub-acute discharge for extended treatment. PICCs are frequently used to obtain central venous access for patients in acute care, home care and skilled nursing care. Since complication risks are less with PICC lines, it is preferred over other forms of central venous catheters. A PICC is not appropriate for all patients. Proper selection to determine the appropriateness of this device is required. The PICC may have single or multiple lumen's. This depends on how many intravenous therapies are needed. A PICC line can be used for antibiotics, pain medicine, chemotherapy, nutrition, or for the drawing of blood samples. PICCs can be inserted by radiologists, physician assistants or certified registered nurses. They are inserted using ultrasound technology at the bedside or ultrasound wit fluoroscopy. Chest radiographs are also used to confirm placement of the PICC tip if it was not inserted using fluoroscopy.

RWJ. Day 6

Today was a quiet one, Sarah still not feeling well, not able to eat, sleeping a lot. I drank too much bad coffee, went for 2 walks, found kiosk that sells smoothies, had mango which was yummy. Zen came with good coffee and mail, I am now still awake at 11:30pm worrying about the ever growing pile of medical bills! Nurse will be coming back any minute to start an IV nutritional supplement since Sarah can't eat. Tomorrow is the big day, Sarah gets her "rescue" transfusion of her own white blood cells. Everything so far has happened right on schedule, we are moving along anxiously awaiting the day we can bring our girl home! Have to try and sleep now. Maria

RWJ. Day 5

Sunday is a lazy day, even in the hospital! Sarah woke up not feeling well, the only things she can keep down are pretzels and Pepsi. We watched 2 movies so far today, "Footloose" ( the new version is no where near as good as the original), and our all time favorite movie "Music and Lyrics". Zen came to see us, and brought more supplies from home, then Greg made a surprise appearance after work. It was great to see them, we miss our boys very much, Sarah was exhausted after they left and slept for over an hour. I am tired too, doing nothing is exhausting! I have been trying to knit, but my heart just isn't in it, I am just not inspired right now. This is actually the second time I am trying to write this post, once again I tried to make corrections, and it disappeared, I never learn! Anyway, I am feeling blue today, seeing my baby in pain is literally breaking my heart. Sarah reads my blog, and doesn't like me to get too "mushy" so let me just say that for me, as a mother, this is a nightmare. PLEASE, God if you are out there and listening, make my baby get well quickly; she is young, bright and beautiful, and she has a lot of living still to do! We are counting down the days until Sarah's 20th birthday, 17 to be exact, all she wants is to be at home, and to be healthy and "normal" again, oh and let us not forget, she wants a car! That's my girl, wish big sweetheart. 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. Thanks for listening, maria

RWJ. Day 1

Day one at RWJ. Arrived about 9:30am, there was a ridiculous amount of traffic on the turnpike this morning, and when we arrived the parking lot was already full and the line up for valet parking was down the street!! This is a very busy hospital. Then of course there was a room full of people waiting to be admitted, but our turn came quickly and before we knew it, we were settling into room 419. We met the nurses, answered the usual questions, Sarah had blood drawn and fluids started, then we met her team of doctors. Everyone has been very nice and understanding, they explained the protocol and layed it all out on a calendar, so we all know what is happening and when. It is scary, overwhelming, and a little surreal, we have been working towards this "final" step since the beginning of Sarah's treatment; now it is here and we are praying for a speedy recovery! The food here is actually pretty good, we have had lunch and dinner, so far so good. Sarah gets a menu and places an order directly to the kitchen, so the food is delivered hot within an hour, this is a great feature, she gets what she wants, when she wants it, no more trays of cold food lying around. The chemo part of this regiment is run over 3 days, for about 3 hours the first day, and then about 1 hour on the next 2 days. Sarah is already half-way through today's dose! After the 3 days of chemo, there are 3 "rest" days, and then the transfusion of her own white blood cells, and then we wait for her counts to go up. There was one mini blow-up today, the enormity of what is happening became a little to real, but all is calm now. Sarah is already snuggled into her bed, anxiously awaiting 2 hours of American Idol! Oh goody, I think I will start a new knitting project. It is going to be a long haul, so cards, e-mails, and prayers are welcome! Love to all, Maria P.S. sorry for any errors, every time I try to correct on the iPad, I lose everything!

On the road again....

Greetings all,
Had a great weekend with mom and dad, was sorry to see them leave today!
Spent the day catching up on laundry, packing, and sorting through medical bills.
Tomorrow we are off on the second part of our journey; Sarah will be at Robert Wood Johnson Memorial Hospital for approximately 3 weeks, getting her "final" chemo treatment and then the stem-cell transplant.
I am anxious, scared, excited, and hopeful for what is coming next; looking forward to hearing that my girl is cancer free!  Off to watch NCIS, and enjoy sleeping in my bed for one more night, not really looking forward to the dreaded recliner!
I will keep you all posted on Sarah's progress, please keep us in your thoughts and prayers.
Maria

in honor of my super sarah
super penguin
from J. Goode designs