Sarah's Room

 **All pictures taken by Maria, not Zen, that is why they are not perfect- but at least you get to see the almost finished product!

Before

Before

During

After

Shelf made years ago by my dad, painted by mom, decorated by me.

New TV stand- I love Home Goods!!

New mirrors, decorated by me.

still looking for large mirror!!!!

can't survive without the fan!

Complaints of the day

Afternoon all, minus the good. The complaint department will be closing soon, here are some of the days highlights: no sleep last night, lots of beeping monitors, visits from nurses,and lack of comfortable beds. The result, 2 exhausted, crabby, sore ladies. Sarah is still feeling blah, but her ears and throat are not red, the methotrexate level is down, but so is her red blood count, so before we can leave the doctors strongly recommend a transfusion. Apparently I coeorced Sarah into agreeing to the transfusion, so now I am on her s**t list. I only agree to what the doctors want, never to what she wants, so I am ruining her life!! Big surprise! So Sarah is now sleeping, and I am sitting here trying to stay calm, which should be easy since apparently my life is perfect and stress free! I just pray we go home later, because my back can not take one more night in the "chair." For now I will go back to my knitting, and maybe contemplate more ways to "ruin" Sarah's life while doing everything Humanly possible to insure she has one!!! Bye for now, Maria

Greetings, Today has been a long day; I was up at 5am, Sarah wanted me to lie next to her, she fell back asleep, but I did not. By 8:30 we were off to get her cat scan, someone from transport pushed the wheel chair while Sarah held onto the IV pole, and I followed along trying not to get my toes run over! Once we got back to the room, Sarah went back to sleep, in fact she slept most of the day, she was feeling tired, sore, and out of sorts. I went for coffee, showered, knit, and watched my girl sleep, hoping she would wake up feeling better, but no such luck! In the afternoon, I walked around the lobby a few times,I am so stiff from sitting all day, and not really sleeping at night. Zen came to bring us dinner, hoping to hear some test results, but we had nothing significant to report, hopefully tomorrow we will get some answers. After Zen left, Sarah was a little weepy, she wants to be home, which is pretty funny since when we are home she wants to be somewhere else! She finally settled down and was sleeping by 9pm, I watched TV, and now I am waiting for my alieve to kick in so I can hopefully sleep. The days seem to be getting longer and longer, it is also getting harder to find patience, but I am trying! Well my eyes are closing, so that's it for now. Night all, m

Number 5

Greetings from room 309, yes we are back in our old room, yes it is still really hot! No a second hospital bed does not fit, so I am back in the recliner for the night- I started out with a back ache, who knows what I will leave with. On a positive note, Sarah's PH level went up really quickly today, and the pharmacy mixed the chemo in record time, so she started before 4 pm, Yeah! Unfortunately, she is still getting fevers and chills, and tonight she felt nauseous, thank goodness for anti-nausea meds! In the quest to discover where these fevers are coming from, more blood work was ordered, and tomorrow Sarah will have a cat scan to check her chest and lungs, the fun never ends around here! The chemo was done before 10pm, which is a record for us, Sarah is already planning her escape! She finally fell asleep, and I am off to try and sleep too, the mornings start very early here. Night all, Maria

Why do weekends seem so short???

Hi all,
It is Sunday night, the weekend flew by, I am so not ready for Monday!!
Tomorrow is back to the hospital for Sarah's 5th treatment, she has had a low-grade fever on and off all week.  Hopefully all will go smoothly and the chemo won't be delayed again.  As wonderful as everyone at the hospital has been to us, we are not looking forward to another long stay!!  The good news is, we are approaching the finish line and praying for a complete remission!  Please continue to keep Sarah in your prayers, it is very much appreciated.  Time to go finish packing.  Bye for now, maria

Hi everyone,
Today I got up late, drank coffee, tried to get Sarah up, showered, tried to get Sarah up again, got dressed, dried hair, asked Zen to get Sarah up, threw snacks and knitting in a bag, listened to Sarah complain about getting up, left house for hospital and doctors appointment, arrived at hospital by 9:10 am!!  Sarah got checked in and got her vitals checked, went to an examination room where Sarah twirled around on the doctor's bench, almost falling off, we met with Dr. M. and kept questions to a minimum as per Miss Cranky Pants, then off to infusion center for treatment.  Sarah read and listened to music, I read, knit, and dozed off for a while, Zen went to the mall!  We arrived home about 2:30 pm, realized we had not eaten yet today; Sarah had 4 waffles, I had a cheese omelet, fruit and the remains of a box of chocolate covered pretzels!  Tomorrow will definitely have to be an exercise day for me!  Once at home I opened some medical bills, added them to the growing pile, went on the computer, hooray! "Pinterest" sent me an invitation, so I joined and added pins to my boards.  Now I think I need a nap before dinner.  Bye for now.  M


P.S. Some great inspirational sayings I saw on Facebook today!

Road Trip

Today Sarah, Greg, and I took a road trip to Connecticut to see the cousins. We spent the afternoon with the kids, playing and enjoying the nice weather; it felt like a summer day, cookout included! The drive home was spent listening to the Syracuse/Wisconsin basket ball game, Yeah Syracuse!!!! Tomorrow is back to reality, Dr. M, and the outpatient infusion center at Overlook for the first part of treatment #5. Time to get some sleep, night all. M

Questions 3/21/12

Good morning,
Just a quick update before my crazy day starts.
Monday-blocked shawl, laundry, cleaned all day. Why is there still so much dust??????
Tuesday-Spent the day with Michele and Caryn, went to the outlets in Paramus, NJ- 20+ years ago, I worked down the street from the Bergen Mall, when did it become a gigantic outlet center??????????????    

I really need to get out more!

When I returned home, Zen was out, Greg was napping, and Sarah was still not feeling well, even though Daddy took great care of her while I was out.  She is so stressed about everything that is happening in her life, I wish I could make it all better, but I can't, and that is so frustrating!

Reality can be cruel, especially when you have no control over it.  Dealing with uncertainty has never been a strength of mine; it is not one of Sarah's strengths either.  The future, both short term and long term, still holds so many unknowns for us; it is really hard to continue taking "one day at a time."  There are still so many unanswered questions, and for someone who likes to read the last chapter of a book, before being able to really enjoy the whole story, this "not knowing" is torture.  I just want my girl to get better, to feel better, to BE better!  I want this nightmarish story to end, I want to get to the happy ending!
I need patience, so today my goal is to try and find some, any ideas??
M

Sunday 3/18/12

Sunday night already, how did that happen?????
Sarah and I got home Friday afternoon; I caught up on laundry, she rested, Greg yelled at the TV(it is March Madness in more ways than one around here!!) Zen made lobster tails and steak for dinner, at Sarah's request.  Caught up on our TV programs, yeah DVR, and before we knew it, it was bed time.
Slept late on Saturday, it was great to be in my own bed, and not be woken up at all hours.  Sarah and I went to Target, where we found 2 plain mirrors for her room, which I plan to "decorate." I went to Home Goods, where I found the perfect piece of furniture for Sarah's TV, the best part was the low price!!!! Later on, at Michael's, I picked up some ribbon and such to decorate the mirrors, all in all a very productive afternoon.  Helped Zen make corned beef and cabbage for dinner, "Happy St. Patrick's Day", and finally sat down to knit.  This morning I slept late again, caught up on all the knitting blogs I like to read, helped Sarah get ready to go the Club with Zen, and decorated the mirrors we had purchased for her room.  If we ever finish hanging everything in Sarah's room, I promise I will take pictures and post them!! (Apparently we have run out of the proper size hooks, with any luck more will be purchased soon.)
Now, I have to sort through the very large pile of medical bills that I have been avoiding, or I could just wait until tomorrow!  I think I will go knit instead.   By the way, I finished another shawl, made from the beautiful yarn I picked up when in Saratoga a couple of weeks ago, just have to block it and then take pictures.
That my friends is a summary of the weekend, which went by entirely too fast!
Maria

Back Again

Hi again, well it is 6pm on Thursday and we are still in the hospital. Dr. M says we should be good to go tomorrow, hopefully early! Sarah is done with chemo, but still getting the antidote. She wants to go home, still not accepting that we have to stay until the Methotrexate level goes down. This is really important so that her kidneys are not damaged. I was gone from 12 to 1:30pm today for my eye check, everything looks really good, literally, and my vision is almost 20/20!!! It was rather chilly today, especially since I had on a short sleeve top, capri pants, and sandals; guess Mother Nature was just fooling us into thinking Spring was here yesterday! Currently Sarah is watching a Harry Potter movie on the TV and you know what I am doing, hopefully this entry will publish on the first try. Later we will be watching another exciting episode of American Idol, or maybe the conclusion to Project Runway All Stars, excitement either way!! When next you hear from me I will hopefully be home and using my old, reliable computer, until then, night all.
M

3/13/12. 3/14/12. 3/15/12

Hi all, this is the 3rd time I am trying to write the same entry! I can not figure out why every time I hit publish, everything disappears. Maybe it is because Sarah and I are sharing the iPad. If it does not work this time, you won't be hearing from me until I get home! Here's a summary of what I remember.
Tuesday- Started with Sarah still having the mystery fever. I got up, dressed, and went for coffee. The ID Doctor came to check on Sarah and report that all tests so far were negative. Joyce came in at 12:30 to tell us that Dr. M said it was all right to start the chemo, of course it is a long process, so it did not really begin until 3:30pm. But we were happy anyway because once it starts, the end is in sight. We had a relaxing afternoon, Sarah read the "Hunger Games" and I read magazines and knit. When the fever broke, Sarah was soaked, so she got washed up and I changed her sheets. At 8pm Zen and Greg showed up for "the changing of the guard", Greg was tired, so I had to drive home! Called Sarah and Zen to say goodnight, and by 9pm I was sound asleep.
Wednesday- Woke up early and got ready to go for laser eye procedure. Took a few tries to wake up my chauffeur, aka Greg, but he was ready quickly and off we went. The laser procedure went well, and before I knew it we were back home and I was re-packing for the hot hospital. I went to lunch with friends for Lisa's birthday, and then off to Short Hills Mall with Caryn. I picked up facial cleanser for myself and popcorn shrimp for Sarah, and then Caryn took me back to the hospital for the switch with Zen. Sarah ate her shrimp and took a nap while I knit, before I knew it, it was 6:30 pm and time for my mini massage. I bought dinner for myself and a healthy snack of French fries for Sarah, we ate and then got washed up and ready to watch 2 tortuous hours of American Idol. By 10pm the "Wednesday Night Blues" had set in and I had to climb in bed with my baby until she fell asleep!
Thursday- We awoke to a parade of nurses, aides, food service, and housekeeping staff all coming in to get their morning work done. Dr. G, the ID doctor came to tell us that all the blood tests were negative, but Sarah does have a slight bacterial infection in her intestines. This means more medicine when we go home to prevent it from developing into something worse. Speaking of home, guess who has started singing her "I want to go home" song?? I have to go for a quick follow up eye exam, hopefully when I get back, Sarah will be in a good mood and prepared to stay until the doctors spring us!
My eyes are actually doing great!!!! It is nice to see finally see clearly.

That's it for now.

P.S. In the ongoing race to see who can send the most mail to Sarah, we have a 3-way tie between Grandma, Cioci Helen, and cousin Marybeth. Keep up the good work ladies, it is very much appreciated!

4th treatment ??? Monday 3/12/12

Today both Sarah and I were up at 6am, in preparation for our trip to Overlook Hospital for treatment #4. Sarah still had a fever, so we were not sure if her treatment would start on schedule. After checking in we settled into our room, #322 this time, I think I like this room even more than our old favorite #309, they even found a hospital bed for me! Yeah, no cot, I just hope no one rolls me away in the middle of the night! Sarah had to go upstairs to see Dr. M, and have blood work done, he wants to figure out what is causing these fevers. Sarah got a chill and needed a blanket; a nurse gave her a beautiful pink and black handmade quilt, which was one of several that had been donated to patients of the cancer center. We headed back down to our room to wait for the infectious disease doctor; who after examining Sarah, ordered more blood work, she was thrilled! At this point I used our rest room, and locked the door because it kept swinging open, you guessed it, I was locked in!! Sarah was amused by this, me, not so much. After a couple of minutes, the nurse was able to get the door open,
much to the disappointment of both maintenance and security who arrived ready to break the door down!!! At least I made Sarah laugh. The doctors decided to start her on IV antibiotics for the night, with hopes of being able to start her chemo tomorrow; she is unhappy and wants to be home in her own bed, me too, but this is where we need to be! On a brighter note, we both got our mini massages today; we always look forward to that. Tonight, hopefully we will both sleep, tomorrow is another day and with any luck Sarah will wake up fever free.
Good night all,  M

please start today!!

Sarah's new blanket side 1

side 2

Sunday March 11, 2012

Happy "Spring Ahead" Day, thank goodness most of the clocks change themselves!!!!!  Waiting for Greg or Zen to change the time on my watch.  Sarah has had a fever all weekend, so we have just been home resting.  Almost done hanging pictures on her walls, then I will finally take pictures of the finished project.
Tomorrow is back to the hospital for treatment #4, so eventually we have to pack, but for now we are putting that off.  Yesterday Cousins Elaine and Ann Marie came for a visit, it was nice to see them; Elaine encouraged Sarah to take a picture of Zen with one of Sarah's wigs on, apparently it was quite a hit on facebook!!!  Today I finally managed to take some pictures of my recent knitting, in between catching up with the laundry, and working on Sarah's room.
So here they are:

Shawl by Maria

Shawl by Maria

Shawl by Maria

Hat by Sarah

Hat by Sarah

Hat by Maria

Hat by Sarah

Hat by Sarah

Hat by Maria

Hat by Maria

The best laid plans..... 3/8/12

Hi all,
As you may know, today we were supposed to see another specialist, but Sarah woke up with a fever!  We had to monitor her temperature, give her Tylenol, and start an antibiotic, sooooo  no specialist.  Tomorrow we see the oncologist, Dr. M, hopefully Sarah will still be able to have her Rituxen treatment, as scheduled.  Mom and Dad are still here; Mom helped me re-frame a picture and paint a shelf for Sarah's room, Zen has a lot of things to hang up now!!  He hung the framed "Portofino Italy"  puzzle in the kitchen today, and it looks great.  I had my laser "touch-up" eye surgery yesterday, it was done in a couple of minutes!!!!  Today, at my follow up appointment, all looked good, can't wait to get the other eye done now.  Greg and Dad watched the Syracuse basketball game, and ate brownies!  All in all a good day, though Sarah could have done with out the fever.  Tonight is "American Idol" and another puzzle.  
Bye for now,
M

3/6/12

Hi all,
Just a quick update; went back to doctor, still feel lousy, but she seems to think I am getting better. My sister Chris, and her children, Rachel and Christopher came from Vermont for a 24 hour visit, short but sweet! Today Mom and Dad arrived for a visit, hopefully longer than 24 hrs! Spent time on phone with insurance company, always a treat! The bills are starting to come in, maybe that is why I still feel sick!! Tomorrow, Wednesday, laser eye surgery for me. Thursday, fertility specialist for Sarah, and Friday back to oncologist. That my friends is our exciting schedule for the week. I was able to get a haircut today, and for that I am very thankful, it was long over due. One of these days I will get around to taking pictures of my finished knitting, and Sarah's almost finished room. Time to go watch my favorite program, NCIS. Bye for now.
M

One More Thing 3/2/12

Shame on me, I was so busy whining about my stuffy nose, that I forgot to mention something really important.  SARAH'S  "LEAP DAY" MRI WAS GREAT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
THE LYMPHOMA'S HAVE SHRUNK 90%!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Everything happened so fast when Sarah was diagnosed and we had to make a lot of important decisions in a short amount of time, so this good news is a great affirmation that we made the best possible choices for our girl.  She has been through an awful lot in the past 2 months, but knowing she is getting better makes it all more bearable.  Take that big, bad cancer; you just got beat by a girl!

Friday 3/2/12

Hi all,
The Dynamic (mother/daughter) Duo had to be separated for a few days.  When last you heard from me I was getting ready for bed on Monday night, with hopes of sleeping and feeling better, no such luck!  After a sleepless night, I got up Tuesday and got ready to go to the doctor, Zen took me since 1. I had never been there before, 2. I had a pounding headache, and 3. I still can't see all that well!  Armed with medication, nasal spray, cough drops, tissues, and chap stick; we made our way back to the hospital to tell Sarah that Mom had to go home, but Dad would stay with her.  As you can imagine this news was not well received by Sarah, but she did understand that I was pretty much useless at this point, so reluctantly, home I went.  Since Tuesday afternoon I have gone through 2 large boxes of tissues, 2 bottles of Triaminic (yes it is for kids, but it is also the only thing that helps me sleep), about 50 cough drops, an entire box of green tea, 1 bottle of honey, 1 jar of vicks, and a tube of neosporin for my red nose!!  Exciting isn't it?  Oh yeah, let us not forget that I am taking medication that gives me a stomach ache, and squirting saline solution up my nose 3 times a day!  Just to complete the picture, I have not bothered to shower since arriving home.  On a brighter note, I did manage to knit a new shawl, and finish off 2 hats that Sarah knit, during my infirmity.  Sarah and Zen managed to survive the remainder of her hospital stay without me.  Today they are out picking up her new wig.  I suppose it is time for me to take a shower and perk up.
Bye for now.
M