Flying through life 120mph

It's been a while since I posted an update. So I start with the last infusion which was July 24th. They recommend I take the Benadryl this time and since I really had nothing to do I didn't mind taking it.  My trusty sidekick Jill Suwala drove me to treatment again and when I got called back before I could even sit down Jill appeared with two glasses of cranberry juice and two packs of crackers.  This time we did not stop at Wawa first and eat breakfast, so we were hungry. 

A new nurse approach me, to inform me that she stole me from my nurse Katie just because she was also a Cirillo!!!

So now we are Matchy! Me and my new nurse both have the same last name!!  Jim has always teased me that I talk so much I could make friends with a  tree, he also said if I got paid to talk we would be millionaires. It only took me about five minutes but I had my nurses cell phone number!! She opened up about the hard time she's going through and ironically enough, her situation is play-by-play exactly what one of my very best friends happens to be going through.  I told her it would be awesome if she could meet my friend- I told her that we get together for girls nights, where we eat lots of snacks and chat and we hashtag it on Facebook as #fatgirlfriday!  She wrote down her cell phone number and told me that she would love to hang with us and meet my friend !! Who makes friends with the chemo nurses- this girl right here :)

When Andrea left to go get my bag for the infusion Who appeared in front of us like an angel from heaven, this cute little subway girl with a cart full of variety of sandwiches!!! We were starving and we both picked a hoagie, Me and Jill!

I took the Benadryl and I ate my roast beef and cheese as my chemo dripped in, and we chatted more with Andrea. 

I didn't feel that bad this time, I was warned that the third infusion might be the worst but It actually ended up being the easiest!! 

I told my doctor and my nurses that this time after I had the second infusion something new had started about a week after. It started in my hips -they feel like they're being crushed  from front to back in a vice. And then it felt like somebody turned on the switch in my legs because the top of my thighs all the way down to the bottom of my feet are buzzing or vibrating. One of my other friends who has NF2, knew exactly what I was talking about, and she described it as downed wires that were vaulting and zapping. Did you ever have a muscle twitch? It feels like that except it's much faster it doesn't stop and it's a much bigger area like from my hips to my feet. Shortly after that my right shoulder began to hurt when I raised my arm, my right knee also hurt and so did my right ankle. So I basically had joint pain all on the right side but including both hips. On top of that I felt weaker -three times that week my legs collapsed. It was especially hard to go up the steps out front, each step I took my right knee felt like it was going to give out. The doctor said he was unsure if it was a side effects from the chemo, or if it was from my disorder itself. He said if it happens again he's going to put me on steroids. Chemo you betrayed me!! My silver lining was supposed to be that I would get skinny I am not trying to go on steroids and get fat- fatter. 

It also doesn't help that I am doing way too much I'm pushing myself and I'm trying to keep the kids lives as normal as possible. I do have bad days very hard days where everything hurts I'm more weak than normal and more dizzy than normal and top it off with a migraine. Those are the days that I don't even get dressed. But what happens is when I do feel good I take advantage of the good days and I take on these emouous projects, that I think I can do but lately it's ending up that I bit off more than I could chew. 

One day sometime about a week after the second infusion I felt good one day and the whim hit me, to paint my kitchen. We've been in this house for 10 years and all the walls and all the trim is boring old white. It is a flat paint so it's not easily washable after 10 years of babies growing up handprints on the walls stickers on their bedroom doors and just general wear and tear from every day life,I decided that this house needed a makeover. My favorite color is periwinkle. And my most favorite thing on this planet is dragonflies. I always wanted a periWinkle kitchen, accented with pale yellow and dragonflies. So I went and bought paint and while I was at it, The living room and hallway needed to be painted too, so I took a picture of the throw rugs and the accent pillows and that's how I chose my paint colors for the living room. After that I went online to try to find new curtains for the kitchen that would go with my colors. I knew exactly what I was looking for, but I couldn't find it. I wanted pale yellow curtains with a variety of PeriWinkle dragonflies on them.  No luck. So then I got the idea that I would order material and sew my own curtains. And then make reversible placemats while I was at it and also a mixer cover to match. I do not have a sewing machine and I've never made curtains in my life. So right there this has become an epic project. I don't know why I could get these things done in one day, I started it on a Wednesday, and I wanted it to be done before my chemo infusion on Friday. My little wing man was my only helper. Here he is breaking ground he made the first roll!! 

I don't even have to tell you that we did not get done in time. I painted until it was so dark I couldn't see anymore and then the next morning when I woke up at 8 o'clock, I took my morning meds and despite the pain that I was in from overdoing it the day before we painted all day long again. Can you guess that by Friday I was nowhere near finished? 

I was in a lot of pain and my legs were vibrating very bad from going up and down a ladder for two days and also the inside of my arms were bruised because I'm afraid of heights I'm dizzy and I was hugging that latter so tight that I actually bruised my arms. But look how much I got done in just two days

Me and my little Jimmy we painted all day until it got dark and then at night I sewed. I got almost the entire kitchen done and sewed one valance!!

I expected to be down for a few days after the third infusion but I actually didn't feel that bad at all, I was starting to get used to my vibrating legs and I was learning how to compensate and pushed through all the joint pain. That's what I had been doing my entire life anyway. NF2 has a way of making its appearance know it's very bothersome when these things first start but I'm so used to compensating adapting overcoming that has just become a way of life.  The day that I got home from my third infusion I took a little break and then I continued to paint. But I was getting tired very tired and my body was screaming in pain and my neck hurt from looking up and my hands were starting to shake. As luck would have it my aunt is a painter, I know it almost kills me to ask for help when she offered to help me finish I gladly took her up on it and on the fourth day we finished. 

The only thing that I have left to do is the trim. But I had to take a break because we had a graduation party for my daughter Leah. She graduated eighth grade with honors and she got three awards. The presidential academic achievement award she got the honor roll award for maintaining A's and B's all four years of middle school and she got the national physical fitness award. She deserved a party for all her hard work!!!

And in typical Jaime fashion I made all the food myself except for the pizza and the cake. So again despite my screaming legs sore achy body weakness and dizziness for the next four days I cooked I stayed up till 4 o'clock in the morning one night and the other three I was up until 1 AM prepping food. 

I made 4 pounds of my famous pasta salad I made 80 deviled eggs I made 75 spinach balls and I also made sour cream and onion dip and a dip for the veggies that I made up off the top of my head!!

I also made buffalo chicken dip and then I had to shop for this party. I almost cried when I swiped my card at party city. We did all the shopping in one day. And then that night just as me and my kids and Liz friend who lives across the street we're getting ready to start chopping veggies the power went out.  I wanted to scream but it was only out for about two hours and when it came back on at 10 o'clock at night we started chopping!!

Long story short I pushed myself very hard. But that's life life doesn't wait for you things have to get done life has to go on and you can either lay there and feel bad for yourself or you can try to keep up!  I am trying to keep up. 

So I've been in touch with my family doctor call he has increased my pain medicine and he informed me that I have had neuropathy since 2007. You see even my issues have issues. All this vibration and pain is from neuropathy the chemo has made it worse and aggravated it. When I go to Jefferson this Friday, as recommended by my friend who went through chemo I'm going to ask my doctor about glutamine. My friend said it's powder that you mix in your drink and the vibrating legs will stop almost immediately. And my hair continues to fall out even though they said it would not it's falling out. Every single time I wash my hair and rents out the conditioner, i'm getting this in my hands. 

My husband also found a lot of hair stuck to the Seatbelt  in my jeep, and he found another one of hair on the floor in our bedroom. So it's whatever I'd rather have my hearing back then have hair. I just been rocking the Aunt Jemima look, or wearing headwraps. 

 Oh also since the last time I've updated, I had a birthday!! I am now 39 years old which makes me three years older than my mom. She lost her battle with NF2, when she was only 36 years old which happens to be the exact lifespan. 

I'm not really mad about getting older it's a privilege denied to many and I am proud to be 39 with NF2, still walking and still hearing. 

I told my husband that all I really wanted to do was  paint The house and make it the way I wanted it to but I spent more money than I planned to so I told him not to get me anything for my birthday because I really just wanted the kitchen. 

He didn't listen, and what I'm laying on in that last picture is my birthday gift from him and my kids

He told me that I deserve the break and he recommended I get a pillow and take naps out there

I took his advice that day and I slept out there for about two hours. The increase in pain medicine my doctor gave me is making me very drowsy and as you can see, I am way too busy to be slowing  down right now. Yesterday's project I stained the other side of the railing after blazer put it up and then I set the swing up with paper lanterns and refilled the birdhouses my kids had friends in and out of here all day yesterday lucky for them we have tons of party food left over and then late last night exactly midnight on the dot- I finished seeing  another valance!!

The house is coming along the way I wanted it everything always falls into place

And that's why I haven't updated in so long I have been flying through life 120 miles an hour doing my best to ignore this pain and trying to keep my kids lives as normal as possible. Oh and PS two days last week we sat at the river!!! Lazy days at the river is the best part about summer. In the last two weeks I took over 3000 pictures when I finally get a chance to go through them I'll show you my sweet spot deep in the woods on the banks of the river. 

Last picture- here's the one that I finished last night

My phone is at 4%, and this is way too long to proofread and my phones about to die hopefully you understand what I meant and there's not that many typos. Hope you're all doing well and I'll try to update you Friday after infusion number for

Infusion 2

Compared to the horrible scary list of side effects that could have happened, I think I may be getting off easy..
After the first infusion, on the way home, Jim wanted to stop at Wawa and get us smoothies, despite being tired from the benedryl they made me take to help prevent mouth sores and a mouth rash, I agreed.  The minute I opened the jeep door, I smelled an overwhelming wretched smell.  Wet dog?  Decaying road kill??  It's an awful stench to describe. I don't even know, but it made me ill.  The smoothie helped and I kept reapplying hand sanitizer and smelling my hands to try and avoid it.
The next day, the metallic taste started.  Between the smell and the taste which didn't even match, I was very nauseated until about Tuesday. I also noticed that my lower back pain doubled, as well as my insomnia.  I always had trouble falling asleep, but not staying asleep, and now I can't stay asleep, as I'm waking up around 4 am in tremendous back pain, and also to go potty because I had been drinking a ridiculous amount of water to try and flush out the chemo.
I felt a lot more run down than normal, and I now take many breaks during the day.  Despite these new struggles, I still push myself each morning to start a new day with a positive attitude, and got dressed and tried to push through the weak stomach, back pain, fatigue, oh and the hot flashes.  I'm 38 years old, and I'm flashing.  The chemo team called to check on me, and when I told them about the insomnia and flashes, they said my hormone are taking a hit, and may throw me into early menopause.  Great.  This made me even more thankful that I started my family early and planned my children when I was in my early 20's so that I could still enjoy them while I was young active and healthy.  I knew this day would come, and I planned for it accordingly, I'm not letting NF2 win or rob me of my dreams and goals.  So far, it hasn't.  and I know I'm one of the lucky ones.  And very blessed.
I started to feel better besides on and off fatigue and a heightened sense of smell.  I carry a purse full of "chemo candy" and always have something to throw in my mouth if the taste or smells take over.
My hair has taken three major hits after a shower, despite that he told me I would not lose my hair. Maybe I won't lose it all, but I have lost hair.  So, for now, I'm glad its summer.  I bought a load of cute headwraps, and I've just been throwing it up, and putting on a headband or wrap.  Whatever.
After the first week when I thought I'd get away with minimal side effects, the headaches kicked in.  Over the last 14 days, I had six migraines.
They always say that you learn who your real friends are when you are down and out. And this can't be truer.  I got so many texts, visits, calls and well wishes, offers to make dinner, even some gifts!
A shout out to my husband who has stepped up to help, and is very understanding.  If the sink is full of dishes, he says, "just do it tomorrow when you feel better".  At the moment he is swamped with storm damage work because he's the tree man, but he's working 15 hour days, and coming home and helping out as much as he can.  He does all the laundry.  He talked to the kids about helping more, and they've stepped up as well.  They are helping out around the house as much as they can for two kids on summer break.  My best friend Sherry, has offered to come over and clean my house.  My friend Alicia made us dinner.  And my friend Jill up the street is driving me today since Jim is still catching up on work.  My sister in law Angela is watching our kids today so they could swim and have fun and not have to worry about me.  The support that I get from my friends, family and community members is overwhelming.
I did my best to keep moving through the past two weeks, my daughter had a sleepover and the next day we went to the mall.  One thing for sure, I tire much faster now.. So as my son and I waited for the girls to finish, we sat in the message chairs and got a three minute message.  We also went to a summer kick off pool party. We went over my sister in laws on the 4th of July and swam and enjoyed that day in the sun.  Life kept moving.
I'm so thankful for the people that I have in my life.  My number one hero, is my husband.  He always has my back.  My number two are my kids, who never complain or get angry if I don't feel well enough to do something one day, and who for still being young, are starting to do more to help, and never feel slighted or angry that they now have, "a sick mom:"
I have to get ready to go, but later I'll fill you in on so much more..
So far so good.  And thank you to everyone who has been there for me.  Those who called, those who visited and those who have offered help.  I always try to be my best for everyone, and give and help when I can.  You find out who really cares and who your real friends are, when you are down and have nothing to give, but the people remain and stand by your side.  I love you guys.  I don't know what I would do without you.  sincerely

Infusion Day 1

I was going to title this, The Slow Drip, because all the doctors said that the first one goes in slow to be sure that you tolerate it ok, but the actual infusion was the fastest part! It only took less than 15 minutes for all the chemo to go in. And I'm happy to report, I had no adverse reactions as I feared. I didn't drop dead from a stroke, I wasn't allergic to it, I didn't go pale and have an epic nose bleed and die and I didn't have a spike in blood pressure. It was actually quite uneventful. Thank God!!! As always, I had ten million panic attacks for no reason. 

I must say, if you ever need chemo, I highly recommend Jefferson Hospital in Philadelphia! The entire staff is so comforting and nice, welcoming and helpful. First I saw Dr Glass, the neuroncolgist. He checked my labs, and gave me the green light to go downstairs to the infusion room. Once I got down there, my tech Daniel gave me and Jim a tour of the whole oncology ward. He showed us where all the bathrooms were, the snack room and the heated blankets! He showed me how to work the recliner, the call button and the TV.  He gave me a care packet and books on possible side effects and living with chemo and things to look for and when to call the doctor. He again, as Nurse Kevin upstairs did, took my weight and my pressure. In less than an hour, my pressure came down and so did my WEIGHT!! I lost four pounds !!! Just by riding the elevator downstairs! 

Before the infusion my pressure was 117/73. All the docs always joked my pressure would not be the cause of my death. I always run low. 

I also got my own nurse. Every time I go back, I'll have nurse Katie. She's my nurse. I was impressed that the chemo is not prepackaged. The pharmacy makes it up when you arrive. Also, before you get infused, two nurses check your identification bracelet with your special concoction.  Katie also gets points for having no trouble getting the vein! Oh and, Dr Glass already bumped it up to every two weeks instead of every three. 

So then Katie hung the bag and programmed the machine. As I watched it drip, I took my "first infusion selfie"   I'm on my phone and blogger is being a douche and won't let me add a photo 😡. 

Anyway, they let my husband come back there with me, you're allowed one person to sit with you. I was given a benedryl orally before the infusion, and an antineausea was mixed in with the not so slow drip.  In less than 15 minutes it was over and they took my pressure to see how bad it was elevated. 130/83. Still within normal range!! We left after I made my appt for next time which happens to interfere with a party I was looking forward to. I'm still going to the party after. I don't care. 

I fell asleep on the way home, woke up at a wawa Jimmy stopped at and had a new super power- a super strength dog ability to smell. And the smell was - wet dog. Awesome! 

Jim got us lunch and fruit smoothies, we stopped and got new chains for his saws and picked up the kids from our awesome friends- the Campione family! I slept on and off and I was exhausted. But when we got home, I couldn't sleep. I've since gone from extreme fatigue to wide awake multiple times.  If I don't remember to drink, I end up with a disgusting metallic taste in my mouth, which does not mesh with the wet dog smell I smell. But I really can't complain. I do not feel sick. I did not puke, I did not anything that I feared. 

And thank you so much to the Campiones who let my kids stay at their house and play with their kids so mine could have fun and not worry about me!! We love you guys!!

I felt good enough to make dinner tonight, then I got very tired. So my son made me a "comfy bed on the couch" where my trusty pup Blake laid with me and we took another selfie that I can't show you cause I'm blogging from my phone, and now I'm wide awake! 

Day one- done! My whole lifetime more to go !!

The REAL Fight

So, since 2002, I've been a "watch and wait".
I have always preferred to call it, "watch and live". And that's what I did.
In June of 2002, when my first baby was 16 months old,  my doctors found a meningioma tumor in my spinal cord,  that was between the cord and the cord covering, measuring 1 cm.  it was just big enough to put pressure on my spinal cord and cause compression.  I didn't even know it was there, the only thing that was happening to me at the time was -when I woke up in the morning my arms were dead    I couldn't move my hands at all and then for a few minutes I had pins and needles and then my function in my arms and hands came back.   I blamed it on my mattress and so I bought a new one !   I was 26 years old, I had a new baby,  I felt great, my life was fabulous and I was pretending that  NF2 wasn't even there.
I was going to the doctor once a year for MRIs and a neurological exams, and when he would tell me that I was stable I went about my business and life resumed as normal.
The way my doctor delivered that news  was a blow and a shock.  He said leaving that tumor there would give me five years to live,  and having it removed was a 50% chance of being paralyzed from the neck down
 I always wanted to be a mom and I was just starting and hearing the news that I would be a quad and have history repeat itself and I would be paralyzed just like my mother was, in was way, too much for me to handle.  Everything was happening so fast.  He referred me to a neurosurgeon and we were planning a surgery,  but I felt like I was on the outside looking in -  I couldn't believe this was my life .   I found myself just going through the motions.
That's when the daily meds started. Prozac and Xanax.  I just couldn't grasp my options.   I was too busy and I had a lot of things to do.  My plan was to do everything with my baby that my mother never got to do with me such as be a room mom, go on field trips, go school clothes shopping,  go to the mall, go to the movies, just go shopping in general, and go food shopping!!  Up to that day I had never ever called a babysitter.   I took her with me everywhere because I wanted her to remember that we did things together and I took her places.  Plus I just could not see for the life of me any point at all to leave her alone at night while I went out and had fun.   Without her. My idea of fun was her bedtime routine and I was there every single night to kiss her and tuck her in .
It was then that I realized how fast life can change in the blink of an eye.  Letting NF2 win, or take over or even interfere,  was never part of my plan.  I knew that it could, because that's what it did to my mother when she lost her life at the age of 36 but I just never imagined anything like that would ever happened to me. And here I was with a brand-new baby forced to make a decision -do I live five more years and just let it run its course or fight back  and have the tumor taken out and risk being in a wheelchair for the rest of my life, depending on other people and never doing anything with my baby that I planned.
Long story short- I had it removed and the surgery was so successful that I even recovered with not only no function loss but full range of motion in my neck.   After six weeks of round-the-clock care and no lifting and depending on other people , I finally had my life back and we were going to move forward like nothing ever happened.
Six months later -it was a Friday, and I know it was around  4 o'clock because I was watching Oprah, A green thumb print appeared in my vision field everywhere I looked.   Being that it was a Friday and so late I waited until Monday to go see my doctor.   He immediately sent me to an eye doctor who  was local and close because he believed it was an emergency.   The eye doctor noted that my retina had detached spontaneously and called in his associate who was a retina specialist.  He said my retina was hanging by a thread and I needed emergency eye surgery.   It was pretty routine,  my best friend's father had the same surgery, all he had to do was put a retina buckle in.    Yes it was directly related to my disorder because with  NF2,  you get to have weak thin retinas.  So the next day I went to the hospital where the retina specialist preformed this emergency surgery.   I was in recovery with the worst headache I've ever had in my life.   The next day was Thanksgiving and I was home because it was same day surgery.   My eye was bulging and I couldn't stop vomiting because my head hurt so bad.   The doctor called to see how I was and when I told him,he made me immediately meet him back at the hospital.  He informed me, of his mistake.   When you put in the retina buckle you have to fill the space with silicone oil to hold it in place but he accidentally put too much and the oil was spilling into my cornea.   The cornea's natural defense is to grow vessels to fight foreign objects in the eye.   He took some of the oil out and for the next six months at follow-ups, I kept telling him I still couldn't see.   He kept insisting that my retina looked great but he was ignoring what happened to my cornea as it got worse and continued to grow vessels and it was forming a major cataract.
I had another surgery to remove the excess oil and the cataract it formed.  But it was too late my eye was blind, and I sued him for medical negligence. The lawyer was so excited he told me it was a $1 million case and assured me that we'd win because the doctor had even noted that it was his mistake that caused me to go blind.   It took another six months for the experts to review my case and then one day my lawyer came back to my door and he did not look excited anymore.  He said due to my pre-existing condition, Neurofibromatosis type 2, The experts could not prove that I would not have eventually gone blind on my own someday and I had no case.
A single battle lost but not the war -life resumed as normal but.... with one eye.
And for the next 13 years I did exactly what I planned.   We were busy, we did things, we even had another baby.  I was room mom, I went on field trips, I went school clothes shopping, we went to the mall, The movies, Disney, the beach, the river, we had sleepovers, we went to friends houses, I was a baseball mom, a softball mom, I want to school board meetings, I participated in research studies, I had motorcycle runs and benefits to raise money for research.  We had a pretty full life and I was very involved in both my children's lives, and I was a good wife.  And my husband was good to me, and provided for us.  I made a lot of new friends in my community because I met a lot of people through my kids and their school.
I was winning.   I still went to the doctor, though instead of every year it was now every six months.   And I kept hearing the word stable and then I kept ignoring NF2. Until recently when I couldn't ignore it anymore.
My vestibular system has failed completely.  I have rapidly begun to lose my hearing.  The spinal cord tumors have started to multiply and they are all in dangerous locations, all inoperable.  Today I have 26 spinal cord tumors, 7 brain tumors, and one peripheral nerve tumor in my right calf.
I could have several surgeries and let them pluck these tumors out one at a time, with the risk of function loss such as permanent deafness, a paralyzed face- losing the ability to swallow  and more.  Or I could try this chemo called Avastin.   Avastin has been proven to bring back hearing stabilize spinal cord tumors and even shrink brain tumors but it doesn't come without risks.  The adverse reactions include stroke, brain bleed, aneurysms, internal bleeding, holes in the intestines, and bleeding out.
So this is my fight. And it starts tomorrow~ the first day of summer break of my daughter's freshman year, and my son's first year of middle school....and I will have my first infusion at Jefferson.   Every three weeks for the rest of my life or until something better comes along, I will get chemo .  This was a very hard decision knowing all the risks involved- but I had to weigh the risks versus benefits and I've decided this is the best choice and I feel pretty confident that it's going to work.  I'm also going to blog this journey.
 I guess the real fight is now.   So here I go #ikNOWaFIGHTer #endNF