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 !!